New Blog URL

Since AOL is shutting down the blog function at the end of this month, we've transferred the blog posts to:

http://cfs-facts.blogspot.com/

Be sure you change your bookmarks so you can visit us there.

NCF Website Updated - New Articles/Research

The website of The National CFIDS Foundation, Inc. has been updated.   Four
articles (of over 30) were selected to go onto the website from the summer 
edition of The National Forum as members have already received the  fall edition
of the newsletter.  The Memorial List has also been updated as  well as the
newest published medical journal article that has proven that  the assay for
ciguatera is a biomarker for autoimmune diseases.  This  newest research found
that chronic fatigue syndrome was an autoimmune  disease as well as Gulf War
Syndrome and prostate cancer.

Gail Kansky
President, National CFIDS Foundation, Inc.
http://www.ncf-net.org

103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535

More from One-Click

 One More Nail In The Coffin
A New York Times editorial echoes our decade old refrain: "We've long feared that the integrity of medical research is being eroded by conflicts of interest and manipulation of scientific data." In sharp contrast, we bring to your attention an important editorial by Dr. Nassir Ghaemi in the American Journal of Psychiatry (March 2008). Though Dr. Ghaemi has received funding from drug manufacturers, he pulls no punches about the adverse effects of antidepressants.
Vera Hassner Sharav, AHRP

* * *

As Dr. Yunus says, doctors manipulate the data to say what they want it to say.

The best experience I've had with any anti-depressant was the one I could say had no effect whatsoever, positive or negative.  Most of them simply made me sicker.  It wasn't the drug I needed, but it was what the doctor wanted to prescribe -- it was easier for him to slap a "depression" label on me than to accept that a specialist had called it CFS and read up on what to do for that.  You spend a lot of the day in bed, you must be depressed, NEXT!

It's been said that the reason doctors don't like to deal with CFS patients is because it's too difficult for them to deal with someone who doesn't get well.  However, enough of us have improved with proper treatment that I don't buy that.  No, I will never be "cured", but with the right medication, I could've gotten back to work in a couple months.  I'd done it before; I intend to do it again.

The real problem is, CFS is an enigma and will challenge everything you've learned about disease and medication (many patients have the opposite reaction to pills -- I've more than once been awake all night after taking a sleeping pill, and fallen asleep minutes after taking a handful of No-Doz).  It requires more "thinking outside the box" than most doctors are willing to do.  Much easier to slap an inaccurate psych diagnosis on the patient, hustle her out the door, and hope that you offended her enough that she'll go inflict herself on another doctor.

Doesn't it just figure?

AOL assures us that we can "easily" transfer our blogs to a new location, click here. 

So, I click here, and get taken to a log-in page.  Since I don't have a blog there, I try to create a new account, but it says my e-mail already exists in their system.  OK, so I try to log-in at the page that directs me to, which tells me that I can't log in because they have no record of my e-mail existing in their system.   Grrrrrrrr.

OK, finally out-stubborned that, got logged in, created a blog, and can't find the link I'm supposed to click to import this journal.  Hmmmm.

Finally found a link to Help, Importing AOL Blogs.  Which says click here -- OK, maybe the problem is that I came in through the wrong link, and you've got to come in through this door to get the Import link.  Go through all the rigamarole of setting up a second blog, and the word Import does not appear on that page in the spot where it appears in the picture on the Help page.

Go back, re-read Help, Importing AOL Blogs.  It says you can also do it through the Advanced Settings page.  Great.  Click on Advanced Settings ... it tells you how to set up a blog there to be hosted elsewhere, but the word Import doesn't appear on this page, either.  Not only where it's shown in the picture, but nowhere.

Click through a few million more Help pages till I finally find a link to Known Problems.  This tells me what to do if my AOL blog does not complete the import process, but still does not do me one bit of good in starting the import process!

Click around some more, there's a Google Group specifically for this purpose, but all the posts deal with the process stopping midway, none of them tell me how the bleep I'm supposed to start the process.

So, an hour and a half later, I still have not been able to do the automatic transfer that AOL says is "easy".  Haven't even found the magic button to push to start it.

To which I have only one thing to say:

Thank God this is a temporary fix and in a couple months we'll be doing all this in-house at CFSfacts.org, where I do not have to deal with this <steer manure> ... I'll have my very own webmaster to deal with it for me!

The only good news is, I am doing this now, and not 8 years ago when I could only use the computer for 5 minutes an hour, and can now think clearly enough to understand the instructions, and to grasp that the problem is not that I'm failing at the task because I don't comprehend the instructions, but that the instructions are telling me to click on something that doesn't exist. 

8 years ago, I would've been totally exhausted and so frustrated with my inability to understand how it's done that I would've screamed and thrown the computer through the TV.  At least now I know the problem isn't me, because I'm absolutely positive that the word "import" does not appear on any of those pages in any of the places the pictures show it to be.  You can't click what's not there, and this time I'm not missing the word because of the mental fog.

So, in that way, I've come a long way in 8 years, thanks to finally getting the sleeping pills I needed instead of the anti-depressants that made me sicker.  But the joy in knowing that I'm finally improving is overcome by the frustration of having wasted an hour and a half of my limited functional time trying to do the impossible by following inaccurate instructions.

And incredibly annoyed that it appears that instead of just being able to click one button to transfer all these posts to a new blog, as AOL assures will work with this one particular blogging site only, I am, in fact, going to have to waste several workdays manually saving each and every post so we can put them all up at CFSfacts.org when we re-launch.

Nothing is ever as easy as computer geeks make it sound, and I am quite sure that they will figure out some way to blame it on the user that their system is not displaying the correct page with the correct buttons.  

 

LATER

AOL claims that this is simply a matter of Blogger's system being overwhelmed with transfers, which doesn't explain why I can't even find the Import button to click and be told it's not working.

I did find a place to go to ask questions:

http://groups.google.com/group/blogger-help-aol-import

Since you've already created a google identity to set up your Blogger account, it's fairly easy to join the group so you can ask (or complain).

Later

8 hours after starting the supposedly "quick and easy" process of transferring this blog to google, I have given up.  The only answer to be had is that I must be doing something wrong in the transfer process, when, in fact, I can't even find the place to start the process -- I can't be inputting my URL wrong when there's nowhere on the page to put it!

Google has never impressed me.  I use altavista and GoodSearch and find lots of things that google doesn't.  Their Usenet feed qualifies merely as "better than no Usenet at all".  And now their promise that I can just click in one spot and automatically transfer my blog to their site has proven to be yet more empty promises from them, more incompetence, yet more reason to have my blog on my own website with my own Web Guru there to not only answer questions but do the work for me when I get frustrated.

8 hours and a couple hundred webpages/clicks/links later, and I am no closer to getting this blog transferred over, or getting any answers from a live person.  There is nowhere that you can e-mail google from the Blogger site.  I would urge all my fellow bloggers to boycott Blogger, since it's the most useless piece of crap excuse for a website I've ever seen.  The pages that seem to promise you can contact them, simply result in an endless loop of clicking on page 1 to get to page 2 and clicking on page 2 to get taken back to page 1.  THIS IS NOT CUSTOMER SERVICE!

8 hours after I first started trying to report it to google, 7 hours after I reported it to AOL, there is still NO "status" and NO "known problems" on this subject.  All I get in trying to search the site is returned to the same Help page that shows where I should be looking for the word "import", and when I go to my blog, the word is not where it's shown in the picture.  You're supposed to be able to do it through Advanced Settings, but it's not there, either.  I've cleared my cache, removed my cookies, and the problem still remains, that the webpages that are loading on my computer do not have the magic word anywhere on them.

I hope every AOL member who's been caught up in this loop of unhelpfulness sues Google/Blogger for every hour that's been wasted.  Not at the $15/hour you're paid, but at the $75/hour your employer bills your time to the clients.  Maybe that will get their attention at how much time of how many people has been wasted trying to do the impossible.  You can't click on a link that's not there.  And if the link is not there, it does not help to blame the user for doing something wrong on their end.

Google/Blogger are the biggest bunch of idiots in Silicon Valley if they think this is going to impress me to keep my blog there.  As soon as my website's up and running, I'm gone, and it'll be MY website that gets the ad revenue for the page views.  I flatly refuse to use any google product ever again because this experience was the last straw in a long history of disappointments.  And I hope that they've set up a news tracker that tells them when their name hits the web, so that some live person there finally reads what I would've said to them if only I could've found a link that actually led me to an e-mail form. 

NOTE: instead of saying it to google privately via an e-mail, I've posted it on the web where the whole world can see it.  Not quite the way any business wants a customer service problem to be handled.  But they're google, they don't have to give a damn.

10,000!

As I write this, the page view counter has just clicked over to 10,000.

While that's not 10,000 unique visitors, it is still a lot of people who have been educated by this blog.  Some may be patients who benefited from the new research information, others may be people who thought CFS was just fatigue and got a real education in the truth about this misnamed and misunderstood condition.

As we prepare to move the blog to a new home, I want to thank all of you, and hope you'll continue to read when we're back online at www.CFSfacts.org in a few months.  The plan is to finally have everything in one place: the history, the new research, the blog, and a networking area where you can find service providers who understand CFS.  For example (she said, in a moment of blatant self-promotion), who better to edit your article about CFS than a CFS patient?

I'm told that it will take a couple of months to buy back our URL and get up and running, but we WILL get that website up again.

Reno Conference - Schedule - MARCH 2009

9th International IACFS/ME Conference: 
Developing Interdisciplinary Collaborations
Peppermill Resort, Reno, Nevada


March 12th

One day patient conference plus clinician workshops

Patient Conference

Curriculum Include Sessions On:

New Developments in Possible Causes of ME/CFS
New Research on What Helps People Cope with ME/CFS
Latest Research on the Pathophysiology of ME/CFS
Advances in Assessing ME/CFS
New Developments in Pharmocologic Treatments
Clinician Workshops

Will also feature for the first time workshops on:

How to Apply for Grants
Treating Sleep problems among ME/CFS patients
Treating the presumed primary mechanisms in ME/CFS
Behavioral Assessment and Treatment of ME/CFS
How to deal with pain
The Impact of Genomics on Public Health


March 13th

Scientific Conference – Developing Interdisciplinary Collaborations

Invited Address - Professor Yasuyoshi Watanabe, Osaka City Medical School, Osaka, Japan

Following the address by Professor Watanabe there will be two concurrent sessions going on though out the day.  For each paper session, following all the papers, there will be a discussion among panel members about the presented research.

Curriculum Includes Sessions On:

Pharmacologic Treatment Advances
Non-Pharmacologic Treatment Advances in Pain, Fatigue, and Sleep
Virology
Research Neuroendocrine Advances
Networking Lunch - Offering an opportunity for participants to network and talk about possible interdisciplinary studies and what they could discover.

Poster Sessions include:

Virology
Neuroendocrine
Pharmacologic Treatment Advances
Non-Pharmacologic Treatment Advances in Pain, Fatigue, and Sleep


March 14th

Scientific Conference – Developing Interdisciplinary Collaborations

Difficult clinical cases Session - will include a panel with some of the major ME/CFS MDs

Paper Session Curriculum Includes:

New Developments in Epidemiology
Latest Research in ImmunologyAssessment Issues from Biological to Behavioral
New Developments in Pediatric ME/CFS

Poster sessions include:

Epidemiology
Immunology
Assessment Issues
Pediatrics
Genetics,
Brain functioning
Past Presidents Luncheon - Lunch with past presidents of our organization.

Awards Banquet – presentation of the Perpich Award, the Junior Investigator Award, and the Clinician Award (as well as several new awards).


March 15th

Scientific Conference – Developing Interdisciplinary Collaborations

Curriculum includes Sessions On :

Genomics
Research Developments in Genetics
Advances in Brain functioning
International Collaborative efforts

Networking Lunch - Offering an opportunity for clinicians to network and talk about assessment and treatment issues.



Copyright 2008 by IACFSME  · Terms Of Use · Privacy Statement

http://www.iacfsme.org/

Calgary Conference THIS MONTH - newspaper article

http://www.canada.com/calgaryherald/news/reallife/story.html?id=547ca895-9f4d-4dcb-bc3d-f293370c9fc9

CALGARY HERALD

Tired of being misunderstood

As a major conference on chronic fatigue
syndrome and its related conditions prepares to
hit town, we look at the effects this often
devastating illness can have -- and the hope for
those who are dealing with it.


Michele Magnan, Calgary Herald
Published: Thursday, October 09, 2008

Q&A with Dr. Alison Bested


Dr. Alison Bested is one of a handful of Canadian
doctors who specialize in myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and related conditions such as fibromyalgia and
multiple chemical sensitivity.

We spoke with Bested, a Toronto-based
hematological pathologist and co-author of Hope and
Help for Chronic Fatigue Syndrome and Fibromyalgia
Second Edition (Cumberland House, 2008, $20.05),
about ME/CFS, how it's diagnosed and how it's
treated.


- What is ME/CFS -- is it considered a disease?

Disease means there is a specific entity known to
cause it. (That isn't the case here, so this is
considered) a syndrome, and is defined by a list of
criteria. The criteria (include) disabling, pathological
fatigue. People go for a walk and they might stay in
bed for the next three days -- there's this element of
post-exertional fatigue. They also have sleep
problems. They're not getting the deep sleep that
everybody needs in order to feel better. They often
have pain, which can be in their muscles and joints.
They also have brain fog, poor short-term memory,
they can't focus, they cannot multi-task and they
can't pull up words, so they feel stupid. (Symptoms
also include) chronic sore throats, feeling
off-centred, cold and dizzy all the time, heart
palpitations and irritable bowel syndrome.

It's extremely complicated, which makes it so
difficult to be sorted out by doctors, unless they
recognize this whole picture.


- How are ME/CFS, fibromyalgia and multiple
chemical sensitivity related?

They are all distinct, but the reason we lump them
together is we think they're environmentally linked,
in the sense that people are affected by their
environments more than (with) other conditions.
Usually ME/CFS is post-viral, while fibromyalgia is
more commonly related to physical trauma, like a
motor vehicle accident or a multiple head and neck
trauma, and then the pain spreads. Multiple chemical
sensitivity can start on its own, for example if you
have a history of being in a sick building, where
there's little ventilation and chemicals from the
office such as toner or paint. It starts as an exposure
problem that generalizes.


- How broad is the problem?

Ten million people in North America have ME/CFS or
fibromyalgia and only 20 per cent have been
diagnosed. (Those who are undiagnosed) think
they're lazy and crazy and are going out of their
minds. They're such desperate people.


- Can you please explain how ME/CFS occurs?

Chronic fatigue syndrome is a really complex
condition and most often it happens in middle-aged
women, often after some sort of infection. For
example, it usually happens in the winter months,
which is flu season, when someone can't get better
after the flu or something. A woman will often say, "I
can't even get up to make myself a bowl of soup.
What happened to me?"

The illness can be mild, moderate or severe, and
anybody can get it. Children can get it, men can get
it, and you can get it at any age. The majority of the
time, though, there is a history of something that
starts the ball rolling.


- So how do you begin to treat the condition?

It's a total picture because there's not just sort of
one specific therapy that will help everybody. We
look at the treatment in terms of the SEEDS of
health.

The "S" stands for sleep, "E" for the environment, "E"
for exercise, "D" for diet and "S" for support. The
place to start in terms of treatment is sleep,
because most of them have non-restorative sleep.

Look at your sleep hygiene -- things like going to
bed at the same time, having a dark room and the
right temperature and relaxing into sleep.

Potentially getting into medications (will help).
Unfortunately, there's no one drug that will give you
the deep restorative sleep. But in the meantime, at
least it gives the brain and body a break.


- How do people deal with the pain?

This is where the diet comes into play. A lot of the
people who have been ill haven't been preparing
meals, so they may need Meals on Wheels or have
someone feed them. They need to get away from
fried, fatty foods. Have some protein, vegetables
and starch at each meal, and supplement with a
multivitamin.

We almost always use an omega-3 fish oil for cell
repair and omega-6 to help the brain repair. Those
are the basics. (You also) need to look at how they
think about their pain, how it affects them, how they
can react. You have to help them deal with that, and
part of that is looking at the entire pain modality.

Ideally, you try to get them up slowly and mobilized
as they can tolerate. Sometimes they have so much
pain you may have to intervene with pain
medication.


- What's the long-term outlook for people who suffer
with this?

I have seen full recovery. (People will) be able to
work full-time and to have a full social life, but
they'll be back with a difference, because now they
will be mind-body aware. They'll be back, I think,
even better.

When people fully recover, now they know their
body's limits, so they know not to go beyond them
and they learn not to crash. Also, it depends on how
long they've been sick initially. I think the most
important thing is getting a diagnosis.

- Because there are no lab tests or easy ways to
identify ME/CFS or the related illnesses, what can
people do if they think they might have ME/CFS?

The best advice is if you have questions, read the
book. If you think it applies to you, you can take it
to your doctor and ask. Get some help. We don't
want people to treat themselves.



mmagnan@theherald.canwest.com

- - -


An Inside Look at Chronic Fatigue

As a high school sprinter who competed at the
provincial level and a top student with scholarships
to attend university, Russell Jasper had big plans for
the future.

And then, in May of Grade 12, Jasper contracted the
mononucleosis virus.

But instead of going away, as mono typically does in
four weeks, his symptoms lingered.

For a full year, his doctor told him it was just mono
and that he would get over it eventually.

That was five years ago, and Jasper's disabling
fatigue has only worsened.

Diagnosed with myalgic encephalomyelitis, which is
the British name for chronic fatigue syndrome (known
as ME/CFS), the now-23-year-old is housebound.

He has lost 50 pounds in the last few years.
Seemingly simple tasks such as walking down the
stairs, washing his hair or even speaking are
exhausting for Jasper, who spends much of his time
upstairs in his parents' southwest Calgary home.

"I don't really do anything anymore," he says softly.
"I stay upstairs in my little room."

Susan, Jasper's mother and the vice-president of the
Myalgic Encephalomyelitis/Fibromyalgia Society of
Alberta (ME/FM), has fibromyalgia herself and stays
home to take care of both Russell and her
21-year-old daughter Katie, who also suffers from a
milder form of ME.

She says she is looking forward to the upcoming
ME/CFS conference in Calgary because there is a real
need for more information. And she has seen
first-hand how these conditions can be
misunderstood by the public.

"It's like (my kids) have had every aspect of their
lives ripped away from them," she says.

For more information about the illnesses and the
society's work, visit mefmalberta.org.

For more information about the conference, see
sidebar on Page E2.



- - -


The Calgary Conference


Looking to know more about myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and other fatigue-related illnesses?

You may want to check out an upcoming conference
co-ordinated by Dr. Ellie Stein, a Calgary-based
doctor with CFS.

The event is geared towards both health
professionals and people who suffer with ME/CFS and
related conditions such as fibromyalgia.

"There's a really dire need for the average family
physician to learn how to treat the illness," she says.

Family physicians, general internists,
rheumatologists and psychiatrists are invited to
participate in a two-part educational lecture series.

The first lecture, called Diagnosis and Assessment of
Patients with ME/CFS, will be held on Oct. 24 from 1
p.m. to 4:45 p.m. in the Dr. Clara Christie Theatre at
the University of Calgary.

The second lecture, called Clinical Management of
ME/CFS, will be held on Nov. 7 from 1 p.m. to 4:45
p.m. at the U of C's Libin Lecture Theatre.

Researchers and clinicians who work with a variety of
chronic fatigue conditions are invited to a research
symposium on Nov. 8 from 9 a.m. to 4:30 p.m. at
the U of C's Libin Lecture Theatre.

People with ME/CFS and related illnesses, their
families and the general public are invited to attend
a public lecture on Nov. 9 from 1:30 p.m. to 4:30
p.m. at the Libin Lecture Theatre. Experts will share
updates on research and provide tips, as well.

Tickets to the public lecture cost $30 per person or
$15 per low-income person. For more information
about or to register for any one of the events, visit
cme.ucalgary.ca, or call Dr. Stein's office at
403-287-9941.




© The Calgary Herald 2008
       

From One Click

FDA Food Supplements Deaths Claims Are False

(OMNS, October 9, 2008) "Dietary supplements cause 600 'adverse events'", reported USA Today on 22 Sept, 2008. The FDA refused to disclose exactly which supplements allegedly were causing problems. According to national statistics compiled by the authoritative American Association of Poison Control Centers, there is not even one death per year from vitamins. By comparison, FDA acknowledges that prescription drugs resulted in 482,154 adverse-event reports in the year 2007.
Press Release, Orthomolecular Medicine News Service

* * *

Speaking strictly for myself, I've had a lot of adverse reactions to prescription drugs.  The worst that ever happened with vitamins was when they were touting Niacin for pain relief, I took enough to cause something resembling a hot flash.

Most vitamins list the ingredients on the side, so if you're allergic to soy, wheat, dairy, etc., you can pick a brand you won't react to.  Who knows what's in prescription drugs?  They usually won't tell you. 

There's one family of drugs where I had a bad reaction to one and was told by that doctor and several pharmacists to never again take anything in that family.  I've at least twice been given prescriptions for other drugs in that family; the first one, I didn't notice before leaving the doctor's office and the pharmacist flatly refused to fill it.  The second time, I did notice, and the doctor repeatedly insisted "it'll be fine" because he couldn't be bothered to change the prescription.  Two days later, I showed that prescription to a doctor I trusted, who asked "are they trying to kill you?" and told me that the only way I was to take that medication was in a medical facility with the correct high-tech equipment to save my life -- the second reaction is often worse than the first.

So why did I get those subsequent prescriptions?  Either because the doctor wasn't aware that those drugs "react as a class" or because he was too lazy to wrack his brain to think of something else that would work besides the one he always prescribes.  And, in fact, the drugs that actually helped me not only weren't in that family, but weren't even intended for the same purpose -- I did not need anti-depressants because I wasn't depressed, I needed either sleeping pills and/or pain pills so that I could SLEEP.

Karma

What goes around, comes around, and we have seen several instances of people who disputed the existence and/or severity of CFS symptoms either coming down with CFS themselves, or coming down with something with similar symptoms.

In my own life, I have seen someone I know online get kicked in the butt by karma. She had a fibro diagnosis before I knew her, and vehemently disputed that my symptoms could be as severe as I said they were ... right up until she had a flare that landed her temporarily in the same condition that I had been describing. The whole time she was on the couch, she mentally did penance for calling me a liar.

So the question comes down to, what did I do so horribly wrong in my life that it seems the only person I can count on is me? I take some comfort in the assertion of a Buddhist acquaintance that this can be a carryover from a previous life, it doesn't necessarily mean that it's something I did in this lifetime.

Invariably, when it's something that I have complete control over, say meeting a deadline for work, I have no problems. The only thing that success is dependent on is my own willingness to work hard and do a good job. But as soon as I have to rely on someone else – such as a professor giving grades or a co-worker providing his/her share of the work done right on time – that's when the problems start. My career plans were torpedoed by a professor who had a reputation for not giving fair grades to women, no matter how hard a woman worked, she would never get more than a D; it had nothing to do with a personality conflict between him and me, because he did it to all the women. At the office, the assumption was made that Good Old Responsible Karen would pick up the slack and either do both halves of the work or re-do the slapdash job done on the half the other person was contributing. In my last few months at one office, I was constantly writing CYA memos to the office manager, all on the same subject “he procrastinated until I'm given one hour to do a three hour project, and when it's not done on time, which is impossible, I don't want to be blamed for it”.

When I hire people to work around the house, invariably they do half the job: I may be sick in bed, clearly not able to do much, and they come to me at the end of their shift feeling quite smug that they were clever enough to come up with the idea that “all that stuff you told me to put away, I found a box and put it in for YOU to put away!” Which is not the way that I ever did my work ... I always went above and beyond what was expected of me. So clearly, that's not karma for what I did in this lifetime, where I have always (even as a youngster) had a reputation for being over-responsible. And it's particularly annoying that I ask people to do something simple and they can't (or won't) do even that right, to the best of their ability.

I have always joked that my ability to move furniture that outweighs me stems from the fact that “all my life, there has never been a man around when I need one.” And it's true – the men in my life have always made sure they're around when I'm baking their favorite dessert, but if I mention over breakfast that I will need them to carry some boxes or help me clean behind the fridge, they disappear to points unknown while I'm in the bathroom and don't come back till after midnight.

And so it has gone with my CFS. I would have been well and back at work in a few weeks if I had had a prescription pad and could have gotten the pills I asked for the first time I asked for them. Instead, I dealt with a bunch of quacks who flatly refused to do the tests I asked for or provide the prescriptions I requested. I got worse and worse, to the point that I was only able to lie on the couch doing almost nothing, because my success at going back to work was entirely dependent on my being able to rely on someone else to do their job properly.

If I had known that I was going to need the skill in later life, perhaps I would have majored in something that would allow me to go into the lab and do my own research to find a cure for CFS. But there again, I have to rely on other people to do the work for me, and because I have to rely on other people, I've been sick for 21 years without hope for a cure. Elaine DeFreitas gave government researchers everything they needed to confirm her work, and despite detailed instructions on how to do it correctly, they (apparently intentionally) did it wrong, then simply stated the virus she found could not be replicated in their lab, instead of copping to it that it couldn't be replicated because they failed to follow the instructions.

The one thing that has kept me going through all this has been the thought that karma's going to come around and bite these people in the butt. Once I left the office, the irresponsible people were left to fend for themselves, and got reprimanded because I was no longer there to perform miracles and clean up after their sloppy work. Maybe my quacks won't get CFS, maybe they'll get something else equally chimerical that no one believes their symptoms are real.

But meanwhile, just like when things were turned in late at the office, I'm the one who winds up getting blamed for it: doctors just love to blame the patient for not getting well when, in fact, the real problem is that the doctor isn't prescribing the right pills. At the first appointment, I told him what the experts/specialists had diagnosed and told him what to prescribe for it – with all that information handed to him on a silver platter, how can it be my fault that he made a wrong diagnosis and didn't give me the right pills? Yet, I'm repeatedly blamed for not miraculously curing myself when the doctors were doing everything wrong.

Again, it has nothing to do with a personality conflict between me and the doctor, because I hear the same “blame the patient for your mistakes” stories from other patients. One, who had made the rounds of doctors trying to find a diagnosis, then went back to the same doctors to tell them what they had missed, and every one of them put the blame on him for “not accurately describing the symptoms” or “not being assertive enough” in insisting that he really was physically ill and not just depressed. In some cases, his assertiveness stopped just short of punching out a doctor who clearly wasn't listening, so I don't know what more he could have done. I ran into the same thing: I knew what symptoms differentiate CFS from depression, and made sure to mention all of those so that I would not be misdiagnosed with depression. When I complained afterward, he insisted it was not his fault for jumping to the immediate conclusion that a divorced woman must be depressed, and then refusing to be swayed from that wrong diagnosis – it was my fault because “nothing you said made sense”. Which is true: nothing I said made sense in the context of depression because I was deliberately making sure to mention the symptoms that would make it clear I didn't have depression. But it was easier to blame me than to change his mind.

Give me a prescription pad so that I never have to rely on another doctor, and I'll fix my own health problems, to the extent that they're fixable. But as long as I have to rely on someone else to write my prescriptions, I refuse to take the blame for not getting well as fast as other people think I should.

Once I have told them “this is my diagnosis and this is what the specialists recommend for it”, I've done my part. Them doing their job correctly should not depend on whether they think I'm likeable or any other reason than having a good work ethic and taking pride in their work. If you got into medicine for the money, you're there for the wrong reason – go do something like autopsies where the patient doesn't care. Unfortunately, too many doctors, when put on the spot, aren't honest: they know the answer you're looking for is “I went into medicine to help people”, so that's the answer they're going to give you, even when their later actions prove that helping you is the furthest thing from their minds.

I wasn't a big believer in karma until I saw how often it did come around on those who in one way or another made my life a living hell.  My personal belief system is that God is trying to lead me to something.  For example, I was not a particularly patient child; I learned a lot of patience from repeated bouts of bronchitis that kept me in bed 6 weeks at a time.  And all the times that other people have proven themselves irresponsible and unreliable has taught me that I cannot and should not rely on other people: the only person I can rely on is myself, because relying on others just gets me into trouble.  After dealing with a couple of professors who based my grades on my gender and not my actual work, I questioned whether I really wanted to continue at school where I'd have to deal with them, and concluded that I would be happier away from them.  And after dealing with a series of doctors who were not particularly interested in helping me get well, only in not having to discomfit themselves by having to change what they think about divorcees and about CFS, I concluded that self-help is the only help I can rely on.  I'm mostly back to things I can buy at the Natural Foods Co-Op without a prescription.

Being a bad patient may save your life

Being a bad patient can save your life

http://www.cnn.com/2008/HEALTH/10/02/ep.evan.handler.patient.advocate/index.html

By Elizabeth Cohen
CNN Medical Correspondent
 
(CNN) -- You probably know Evan Handler as Harry Goldenblatt, Charlotte York's husband on HBO's "Sex and the City," or as Charlie Runkle, the agent for David Duchovny's character on "Californication." What you probably don't know is that he's a passionate patient advocate, based on his experience being treated for leukemia in the mid- and late-1980s.
 
Actor Evan Handler, currently appearing in "Californication," defied statistics and survived leukemia.
 
In many ways, Handler is the ultimate empowered patient. "I learned that I must always remain in control, double-check everyone's work, and trust no one completely," Handler wrote of his approximately eight months in the hospital. "I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions."
In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself.
Handler survived when statistics said he shouldn't have. He endured round after round of chemotherapy, one infection after another and a bone marrow transplant. In this conversation with CNN Medical Correspondent Elizabeth Cohen, Handler discusses firing your doctor, tattooing medical directives on your stomach and the importance of not doing exactly what you're told.  Watch more on what you might gain from being a 'bad' patient »
Elizabeth Cohen: Were you a "bad" patient?
Evan Handler: The irony of "bad" patients is that they actually do better for themselves. ... There were hundreds and hundreds of instances where my being a "bad" patient saved my life.
Cohen: You write about how nurses tried to give you drugs to which you'd had "horrendous adverse reactions" even though doctors had explicitly written in your chart you shouldn't have those drugs. A friend of mine had a similar problem, and we decided maybe he should have hung a sign around his neck with a list of the drugs he wasn't supposed to get.
Handler: That doesn't sound like a bad idea. [A doctor once told me about] a registered nurse who had a "Do Not Resuscitate" order tattooed on her abdomen. She said she felt it was the only way her wishes would be respected.
Cohen: You write about how you became "a criminal of sorts" by forging your doctor's signature on authorization slips so your bloodwork would be done by a lab that ran the tests more quickly. Were you afraid you'd get caught?
Handler: Nothing bad is going to happen to you if you don't do exactly as you're told. They weren't going to put me in jail. I worried about getting caught only because then I wouldn't be able to do it any more.
Cohen: You describe your first doctor as being nasty, hostile and disrespectful. He yelled at your father for calling him on the phone with a question about your care. He yelled at you when you were in the middle of chemotherapy and came to see him with a rash and a fever because the fever was only 100 degrees. Did you wait too long to fire him?
Handler: Oh, yeah. Doctors had told me that I would be endangering my care if I switched doctors, but that advice was criminal. Look, the only way to change things is through the marketplace. Recently I needed to have something in my mouth looked at. The doctor performed a biopsy without lidocaine -- just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor, and if you have the energy, tell them why you left.
Cohen: When you were being treated for leukemia, you were very, very sick. You said sometimes you were barely conscious. How'd you keep up the stamina to keep double-checking everyone's work?
Handler: I was lucky to be able to maintain my strength and do it as long as I did, and my girlfriend at the time, Jackie, was willing to sit by my side and advocate for me, and she was very skilled at doing it. You wonder, how many people die from illnesses because the strength to keep up vigilance runs out? 

 

Call for Papers for March Conference

Call for Papers 9th International IACFS/ME Conference Developing Interdisciplinary Collaborations: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses March 12-15, 2009 Reno, Nevada (Lake Tahoe area) DEADLINE extended to November 1st The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) invites potential presenters to submit abstracts for our next biennial meeting, which will be held in Reno, Nevada, March 12-15, 2009. Integrative conference themes will focus on fatigue, pain, sleep, pediatrics, cognition and brain function in Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses (e.g., cancer fatigue). In addition, different segments will address advances in assessment and treatment (from biological to behavioral), as well as new developments in immunology, virology, and neuroendocrine research. There will also be lectures and professional workshops on “newest clinical protocols”, “what genes can teach us” and “CFS state of the science / art; where does the research go from here?” Papers will be reviewed by the Conference Planning Committee for selection as an oral lecture, short oral presentation, or poster presentation. Attendees to IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, academic researchers, and educators. Papers should reflect this level of experience and expertise. It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists. Abstracts selected will be published in the conference syllabus. Abstracts Abstracts must be non- commercial and focus on one or more of the areas indicated above. Abstract format: one page maximum in length (single spaced, 12 point font, one inch margins), listing all authors with presenting author first in bold, affiliated institution(s), and these headings in the text: Objectives, Methods, Results and Conclusion. Include at bottom of page: presenting author’s full name, academic credentials, and mailing address with city, state or province, zip or postal code, country, and E-mail address. Standard Submission Process Please E-mail abstracts (as Microsoft Word attachment or in body of e-mail) to greg@iacfsme.org no later than November 1, 2008. Presenting author will be contacted in November 2008 and advised if submitted abstract (s) or short oral presentation, the presenting author will be required to provide a Curriculum Vitae and complete necessary forms as directed in order to comply with AACME requirements for accreditation. Authors will be advised of the date and time of their presentation. If selected as a poster presenter, presenting author will be provided with specifications for presentation and display. Submission of Rapid Communications (Posters Only) Using the same abstract and submission requirements above, potential presenters may submit a poster abstract by January 15, 2009. Accepted Rapid Communications posters will be published in the conference program. Questions: Regarding papers or the submission process should be directed to IACFS/ME Administrative Office, Attention: Greg Fillmore; E-mail: greg@iacfsme.org Phone 847-258-7248 Learn the benefits of membership! Join IACFS/ME Visit www.iacfsme.org The International Association for CFS/ME 27 N. Wacker Drive Suite 416 Chicago, IL 60606 admin@iacfsme.org Open Letter to IACFS/ME members and fatigue-interested professionals Dear IACFS/ME Member: I am hoping that the March 2009 IACFS/ME International Meeting to be held in Reno, Nevada (USA) will be our best meeting ever! The breadth and depth of presentations, literally from around the world, will afford each of us an opportunity to discover new facets of CFS/ME and related illnesses. Just as importantly, this international meeting will afford us an opportunity to discuss our interests with colleagues and friends, and to learn of the interests and experiences of colleagues previously unmet. The IACFS/ME International Meeting also affords us an opportunity to increase the breadth of scope of CFS/ME research by piquing the interests of young investigators and investigators to-be. What better place to introduce graduate students or a younger colleague to the opportunities of CFS/ME research and complex issues that need to be addressed than at this meeting? Please consider bringing a graduate student or younger colleague to the March 2009 International Meeting. More senior investigators will benefit from discussions with individuals whose training is somewhat different from theirs and perhaps have different approaches to research challenges. Younger investigators and graduate students will benefit from the experiences of mature colleagues who have worked on various aspects of CFS/ME and may spark a new interest in those who are at the beginning of their careers. In short, make the March 2009 International Meeting more robust and more stimulating by encouraging a younger colleague or graduate to join us and participate in our biennial event. I am looking forward to seeing the two of you at the meeting! Sincerely, Kenneth J. Friedman, Chair of Membership IACFS/ME

* * *

Literally, if it kills me, I plan to be in Reno for this conference.  It's two hours up the freeway, a little longer by Amtrak, and will give me a chance to talk to the doctors about things that I'd like to see researched, and how much money needs to be raised in order to get that research done.

GOOD NEWS!

I've been advised that the registration on the CFS Facts URL has expired, so now we can buy it back and get it back online!

Rome was not built in a day, and neither will this be, but I do have two good computer minds working on a solution to transferring this blog to that site in its entirety.  So, even if we're not up and running there before this blog is removed by AOL at the end of the month, check back with CFSfacts.org regularly until you see that we are up and running.

And hopefully, once I'm blogging on a site where my webmaster can track IP numbers, a certain group of constantly abusive commenters will be proven to be one person and her sock puppets and we can expose her by name.  Or maybe the fear of being exposed and sued will stop the attacks.

The Latest from NCF

www.NCF-net.org is adding a page to its website with relevant patents.

Did you know that in the early 1990s, Elaine DeFreitas found a retrovirus in the blood of CFS patients?  Her tell-all CFIDS Associated Virus (CAV) patent will be one of the first that NCF posts.  In plain English, anyone who says CFS is all in your head is almost 20 years behind the times!

There's also a patent for a neurasthenia virus, which produces leukemic cell types (a connection NCF is now researching) and one for a stealth virus/ciguetera toxin.

The truth about CFS is out there, and it's not what CDC wants you to believe.  There are plenty of websites that have the truth, which comports with the patients' experiences, that the problems "all started with a virus".  The incidence of mental illness in CFS is no higher than in the general population.

Anyone who wants to dispute whether CFS is a real, physical illness, needs only to read these patents.  Doctors who have seen actual CFS patients (as opposed to those who have only read about it or seen patients who were misdiagnosed) have repeatedly observed that they're sicker than late-stage AIDS patients.  Autopsies have proven we're not imagining things ... there's inflammation of the brain and spinal cord that can explain all the symptoms.

I don't care who tries what sort of torture to get me to change my story, I will continue to tell the truth: I was happy and healthy until one day in February 1987 I collapsed with a 105 fever and what appeared to be stomach flu, and I've never felt completely right since.  Researchers have found enterovirus (i.e., stomach flu) in the blood of CFS patients.  It adds up for me.

 

Hmmmm

ProHealth.com reports:

Study Confirms Pain is the Cause of Osteoarthritis, Not the Symptom
Pain transmitted along nerves to the spinal cord stimulates inflammation that travels back to the joint - BUT interruption of the cross-talk allows the joint to heal. Existing drugs accomplished this in animal trials.

Bodily Pain Frequently Unrecognized & Misdiagnosed Sinusitis Symptom
Georgetown experts conclude pervasive bodily pain is a frequent, unrecognized symptom of sinusitis not dealt with in medical training and severe enough to be misdiagnosed as fibromyalgia, arthritis, ME/CFS, or depression.

Politics (sort of on topic, but not entirely)

Since it’s political season, let’s talk politics. I’m sure what I’m about to say will infuriate both sides.

I think we should be tough on crime. ALL crime. The guys who lined their pockets while running Lehman Brothers, AIG, etc. into the ground should be doing hard time. No, not sharing cells with murderers at San Quentin, but not at some country club, either. At the other end of the economic spectrum, illegal immigrants should get a one-way ticket home, paid for by fines on their employers; don’t just dump them a mile over the border in Tijuana where they can beat the Immigration agents back to downtown San Diego, but take them back to Central or Southern Mexico (or the major airport nearest wherever they came from originally).

Doctors who cause serious injury should be sentenced under the same guidelines as any criminal who causes Great Bodily Injury: earlier this year, I worked on a case where a criminal got 25 years for rendering someone permanently disabled. Why shouldn’t my doctors serve that same amount of time for leaving me permanently disabled? Oh, I’d give them some special privileges that the shooter didn’t get – they would spend their sentence working in the prison’s sick bay instead of making little rocks from big rocks – but they’d wind up paying for their malpractice in the same way I’m paying for their malpractice: by losing their ability to earn a living and their ability to come and go as they please.

I also think that we need to be more charitable to our brothers and sisters who have fallen on hard times. When a company shuts down, such that it’s readily determinable that people did not become unemployed through anything they themselves did wrong, let’s offer them "living wage" unemployment benefits and for a longer period, say 12 months instead of 6. And if an entire industry goes under, making it harder for people to find work in their field, make it 18 months. There are not many people who will choose to collect $1500 a month ($8.66/hour) for the full 18 months when they’ve been offered a job paying $3500 a month ($20/hour) with medical/dental and other benefits.

It’s been repeatedly determined that it’s impossible to survive on minimum wage, yet some of our disabled are expected to scrape along on less than half that pittance! Again, a tiered system should be put in place: those who are permanently disabled or temporarily 100% disabled should get enough to reflect that they cannot work part-time to supplement their benefits – someone who is only partially disabled is allowed to earn about $900 a month without losing their benefits, so someone who absolutely can’t work should get that extra amount to reach income parity with the partially disabled.

I can understand the logic of avoiding potential fraud by making disability benefits less than a minimum wage paycheck, but let’s be reasonable. Make it $50 or $100 less per month, not $500 or $800 less. Someone who became disabled through no fault of their own should not be reduced to sleeping in the gutter because their disability check is less than the rent/utilities on a studio apartment. (In this area, the waiting list for subsidized housing is about 10 years.)

And, on that subject, how many disabled people could go back to work with proper treatment? Penny wise and pound foolish, some treatments are denied as "too expensive" when it’s even more expensive to keep the person on Disability benefits for years than to front the money necessary to get them back to work. For example, Ampligen, which has been shown to work for CFS, costs $20,000/year. Although other countries have approved it, the US has not. And it’s been insinuated to activists that even if it were FDA-approved, government health care programs would not pay for it because it’s too expensive. Which, in the long run, makes no sense. Pay for the first year of what patients have called a miracle cure, so that I get well enough to return to work, and I’ll earn enough to continue paying for it myself. And I’ll be paying taxes, too. Or refuse to help patients bootstrap themselves and they’ll never go back to work because after years off work, they don’t have $20,000 to pay for the first year of treatment themselves.

It’s also been determined by several of our Congresspersons who tried it that it is impossible to eat well on the amount provided by food stamps. A friend who was temporarily not working after surgery had a choice: follow the doctor-recommended diet that would get him healthy enough to return to work, and run out of food after the first week of the month, or eat the things the doctor specifically told him to avoid because they were cheap and he could stretch his food stamps to eat for the whole month.

We can make sure that our less-fortunate are able to eat a healthy diet by allowing them to spend more each month on food, which should result in spending less on medical care. If anyone is concerned about them spending their additional food stamps unwisely, then set it up like the WIC program, where only certain items are on the approved list. Give them coupons that are good only for milk/cheese (including the lactose-free varieties for those with allergies), only for fresh produce, only for lean protein.... and in the quantities indicated on the government’s food pyramid. Don’t tell people they should eat 3 ounces of lean protein, but then provide them only with enough food stamps to buy the cheapest, fattiest cuts of meat. Don’t tell them to drink 3 glasses of milk if the food stamps will only cover the cost of 1 glass a day.

Now that grocery stores have computerized cash registers, and food stamp usage is also computerized, it should be easy to conduct spot checks – occasionally ask someone to produce a specific receipt ("we see that you spent $65.11 at Safeway on September 15, please mail in that receipt or sign here to authorize us to obtain a computer printout from Safeway") and offer nutrition counseling if it’s noted that the person regularly spends most of their food stamps on unhealthful foods.

And let’s talk medical insurance. Ideally, the for-profit insurance companies would be gotten out of the picture so that insurance is available to EVERYONE, not cherry-picking the healthy and leaving the sick/disabled uninsured (or offered insurance only at premiums that far exceed their income). No more of these policies, like the one I now have, that take your money every month and quibble over paying for anything at all, but real medical insurance that covers every doctor visit, every test, every prescription. Those who can afford it would pay for it much the same as they do now, with deductions from their paychecks – employers who had been paying for the insurance would be expected to increase their employees’ paychecks to reflect the expense which is no longer on the employer but on the employee. Those with incomes below a certain level would pay on a sliding scale, say 5% of their income, whether that income is earned, pension, SSDI or self-employment, but receive the same basic policy as those who can afford to pay more.

This is the richest country in the world, why can we not provide our citizens something that is provided even in some Third World countries? Granted, the local witch doctor in the backwoods of some of those countries is no Sloan Kettering, but he’s also more medical care than many of America’s poor and disabled can currently afford, and their citizens who can make it to a hospital are cared for, not first asked "how do you plan to pay for this?" and then threatened with lawsuits and homelessness while still too sick to work in order to pay the bill.

How do we pay for this? Charity begins at home. Dip into the amounts spent on foreign aid – only when every one of our own citizens has what they need, should we feel that we have money to spend improving the quality of life in other countries.

Medicare won't pay for Medical Errors

Medicare Won't Pay for Medical Errors
By KEVIN SACK
Medicare will stop paying hospitals for the added costs
of treating patients who are injured in their care.
http://www.nytimes.com/2008/10/01/us/01mistakes.html?th&emc=th

* * *

Although the "policy" will be that the patients aren't to be charged when Medicare won't pay, I suspect some doctors/hospitals will find a way to get around that and add insult to injury by suing patients to personally pay the additional bills that Medicare refused to pay.  It's already quite common to blame the patients for not getting well, so why would they not take that attitude out of the doctor's office and into the courtroom?

And what about those like me, who need lifelong medical care as a result of malpractice?  Will Medicare (or a private insurer with the same policy) only refuse to pay the particular medical group responsible, or will every doctor in the country be told he's not getting paid for treating me, if it can be related back to the malpractice committed by another medical group?

I think it's a good idea to make hospitals bear the costs of their preventable medical errors, but there are too many ways for this to come back to haunt the patients the rest of their lives, so there have to be some guidelines and safeguards put into place to protect the patient.

Doctors claimed they were unaware of information provided in writing, swore up and down that I myself told them the lies that appear in my medical records (things I know I never would say), and repeatedly found ways to put the blame on me for their malpractice.  It wasn't their fault: I "made no sense", I misunderstood, I told lies about my medical history, I didn't beat them over the head hard enough with the notion of being diagnosed by a virologist so even though that was written down by the doctor it's my fault that it didn't sink in. 

And when you show them the information in black and white, it's somehow my fault that they didn't read it before my appointment.  As I exploded to one of them, what is the point of my filling out a long information form that you sent to me if you're not going to read any of the answers on that form? 

Apparently, I was supposed to come in the morning of my appointment to read the information form to him to be sure he knew what it said, and come back several hours after the appointment to make sure that the correct information was dictated for the records.  It's not his fault that I didn't stand over him the entire day to make sure that he did his job correctly.

10 Things Not to Say

Top 10 things NOT to say to a chronically ill person

See the Rest Ministries/hopekeepers T-shirt with this saying on the back!

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

Copyright, Lisa Copen, Reprint permission granted if the following is included:

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

If you like it, go to their website to buy it!

AOL JOURNALS CLOSING DOWN

I just received this from AOL:

We’re sorry to inform you that on Oct. 31, 2008, AOL® Journals will be shut down permanently. We sincerely apologize for any inconvenience this may cause.

It’s very important that you save your Journals content before the shutdown. We're working on a way to easily move your Journal to another blogging service.

I'll find somewhere to continue blogging.  After having started this here, I realized that I'd have a bigger audience on one of those other services, where more people hang out and are likely to trip over it by accident, but didn't want to have a little here and a little there, so I left it here out of sheer inertia.  Now I have no choice.

Who gets the Government handouts?

Congress has voted against a $700B bailout for bad management decisions at financial institutions.

I can’t help but look at that in a different context. That $700B would be a great help to CFS patients.

It could pay all the American CFS patients’ disability benefits for years. That would help the economy, because we’d actually have money to spend instead of buying as little as possible in order to stretch our savings.

It would provide enough money to give each of us a year of Ampligen treatment to get us back to work/taxpaying status. Again, putting a million people back to work would be a great help to the economy.

It could provide the necessary funding to do the research to find a treatment/cure/vaccine to get us back to work and prevent anyone from ever again being off work.

But, instead, the proposal calls for those who made bad decisions are to be rewarded and those of us who were innocent victims of a particularly nasty virus to be accused of fraud when we ask for a pittance from the government.

Although the law does not require you to be indigent in order to get SSDI, I’ve had judges suggest that I’m not homeless yet, therefore I don’t "need" the benefits, and won’t get them until I do come in and testify that I have lost everything and am living in the gutter. Why not apply that same standard to the management of the failing institutions? Make them sell all their houses, yachts, cars, and bail out their own institutions. Only when they have given back every cent of their ill-gotten gains and are penniless should the government step in.

I’ve been accused of somehow bringing this on myself, and therefore should not be rewarded with SSDI benefits. Why isn’t that standard applied here? They brought it on themselves with their greed, and management shouldn’t be rewarded by keeping their jobs and stock portfolios.

I’ve been accused of committing fraud in order to get my SSDI benefits. Where’s the matching accusation of fraud against these people? People were approved for mortgages without regard for whether they could ever pay them off, and now, as granny would say, the chickens have come home to roost.

I bought only as much house as I could afford (actually, being a responsible sort, I bought a lot less house than I could afford so that I could put a much larger percentage down); no one is concerned about helping me out or rewarding me for my responsible actions. No, everyone’s concern is for the greedy people who could have afforded this house, but instead built a (pun intended) house of cards in order to leverage their way into something three or four or five times the size, and are now being foreclosed on because their eyes were bigger than their stomachs – or their wallets – but they want to keep a house that they still can’t afford to pay for.

I have more legal right to my SSDI benefits than they have to their house (on which many have barely been paying the interest, no payment toward the principal), but it’s their plight that gets everyone up in arms, while a million CFS patients having to fight the system for a monthly pittance is completely overlooked.

There’s an old fable about the ant and the grasshopper. The ant works hard and gathers food for himself, so he’s snug in a house with plenty to eat when winter comes. The grasshopper plays all summer, then finds himself out in the cold and starving. http://www.bartleby.com/17/1/36.html  In Aesop’s day, the grasshopper was expected to take responsibility for his bad decisions and pay the consequences. Nowadays, the ant is supposed to give the grasshopper half of his food, even if that means the ant doesn’t have enough for himself, because there are no consequences for bad decisions.

Apparently, these days the only people who have to pay consequences are the innocent victims of viruses and incompetent doctoring, who are accused of being responsible for their health problems and told they should be able to work if they just stopped thinking bad thoughts. While those who really are responsible for their own bad situations are entitled to government bailouts, no questions asked.

People have been advising me for 8 years that I could get my SSDI benefits in a jiffy with one simple little lie: just say that you’re "depressed and suicidal". There’s no way of proving that, it’s based on your word alone. Yet, a million CFSpatients are denied benefits on the false claim that "the only evidence is your word, and that’s not enough". I have abnormal blood tests, other patients have abnormal brain scans, but that evidence is not considered.  Many of us did everything right (a fair number of CFS patients were athletes who ate properly and exercised daily) and got sick anyway.  But we're blamed for bringing it on ourselves while those who truly did bring misfortune on themselves get bailouts.

And then people wonder why I get offended that there’s government money for everyone and everything except easing the suffering of a million patients? 

CFS and POTS

Source: Monthly Journal of the Association of Physicians (QJM)
        Preprint
Date:   September 19, 2008
URL:    http://qjmed.oxfordjournals.org/cgi/content/full/hcn123v1


Postural orthostatic tachycardia syndrome is an under-recognized condition in
chronic fatigue syndrome
-----------------------------------------------------------------------------
A. Hoad(1), G. Spickett(1), J. Elliott(2) and J. Newton(3,*)
1 Northern CFS/ME Clinical Network, Equinox House, Silver Fox Way, Cobalt
  Business Park, Newcastle upon Tyne,
2 ME NorthEast, Bullion Hall, County Durham, and
3 Falls and Syncope Service, Institute of Cellular Medicine, Newcastle
  University, Newcastle, UK
* Address correspondence to Prof. J. Newton, Professor of Ageing and Medicine,
  Falls and Syncope Service, Institute of Cellular Medicine, Newcastle
  University, Newcastle NE1 4LP. Email: julia.newton@nuth.nhs.uk

Received 1 July 2008 and in revised form 27 August 2008


Summary

Background
It has been suggested that postural orthostatic tachycardia syndrome (POTS)
be considered in the differential diagnosis of those with chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME). Currently, measurement of
haemodynamic response to standing is not recommended in the UK NICE CFS/ME
guidelines.

Objectives
To determine prevalence of POTS in patients with CFS/ME.

Design
Observational cohort study.

Methods
Fifty-nine patients with CFS/ME (Fukuda criteria) and 52 age- and sex-matched
controls underwent formal autonomic assessment in the cardiovascular
laboratory with continuous heart rate and beat-to-beat blood pressure
measurement (Task Force, CNSystems, Graz Austria). Haemodynamic responses to
standing over 2 min were measured. POTS was defined as symptoms of
orthostatic intolerance associated with an increase in heart rate from the
supine to upright position of >30 beats per minute or to a heart rate of >120
beats per minute on standing.

Results: Maximum heart rate on standing was
significantly higher in the CFS/ME group compared with controls (106 p/m 20
vs. 98 p/m 13; P=0.02). Of the CFS/ME group, 27% (16/59) had POTS compared
with 9% (5) in the control population (P=0.006). This difference was
predominantly related to the increased proportion of those in the CFS/ME
group whose heart rate increased to >120 beats per minute on standing
(P=0.0002). Increasing fatigue was associated with increase in heart rate
(P=0.04; r^2=0.1).

Conclusions
POTS is a frequent finding in patients with CFS/ME. We suggest that clinical evaluation of patients with CFS/ME should include response to standing.
Studies are needed to determine the optimum intervention strategy to manage
POTS in those with CFS/ME.


Introduction

Epidemiological studies suggest that in the United Kingdom 0.2-2% of the
population is affected by chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) that accounts for 1% of all primary care consultations.1 CFS/ME
affects all ages and can profoundly influence a sufferer's ability to
function on a daily basis, work or attend school. Despite its impact on the
population, the cause of CFS/ME remains unknown and there are no effective
pharmacological treatments.

Studies show that fatigue is experienced by almost 50% of those with postural
orthostatic tachycardia syndrome (POTS)2 and it has been suggested that the
presence of POTS should be considered in the differential diagnosis of all
patients diagnosed with CFS/ME.3,4 However, evaluation for POTS is not
considered a routine part of the clinical evaluation of those with CFS/ME and
the recently published UK NICE CFS/ME guidelines do not recommend measurement
of haemodynamic responses to standing in the assessment of those diagnosed
with CFS/ME.5

We therefore examined the prevalence of POTS in a cohort of those with
CFS/ME. To do this, responses to standing were examined in a large series of
subjects with CFS/ME compared with controls.


Methods

Subjects

Subjects with CFS/ME (Fukuda Criteria6) were identified via the patient
support group 'ME North East'. Subjects had been diagnosed with CFS/ME in a
specialist CFS/ME service within 2 years of assessment in the autonomic
laboratory. Controls were recruited via notices placed within the hospital.
Both patients and controls were excluded if taking any medication that could
influence assessment of haemodynamics (e.g. beta-blockers, calcium
antagonists, anti-depressants). Subjects were excluded if not in sinus
rhythm, unable to stand or unable to attend the autonomic laboratory for
assessment. The study was reviewed and approved by the Newcastle and North
Tyneside Local Research Ethics Committee. All patients and controls provided
written informed consent.


Symptom assessment tools

Subjects and controls completed on the day of assessment, a measure of
fatigue impact [Fatigue Impact Scale (FIS)]. The FIS is a 40-item
symptom-specific profile measure of health-related quality of life, commonly
used in medical conditions in which fatigue is a prominent symptom. The scale
allows patients to rate each item on a scale of 0-4, with 0 representing no
problem and 4 representing an extreme problem. Individual scores are summed
to provide a total score with higher scores indicating worse fatigue. This
tool has been validated for self-completion (i.e. assesses a patient's
perceived level and impact of fatigue) in both CFS/ME and normal
populations.7,8


Assessment of haemodynamic responses to standing

Subjects underwent formal autonomic assessment in the cardiovascular
laboratory. All subjects refrained from smoking and caffeine ingestion on the
day of investigation and ate a light breakfast only. All investigations were
performed at the same time of day, and took place in a warm, quiet room. All
cardiovascular assessments were carried out with continuous heart rate and
beat-to-beat blood pressure measurement (Task Force, CNSystems). Heart rate
and blood pressure responses to standing over 2 min were measured.9 Data were
digitized and stored for offline analysis by an investigator blinded to the
fatigue status and whether data was from patients or controls. Baseline
measurements were taken as an average for 20 beats in supine position
immediately prior to standing. Orthostatic heart rate change was the change
in mean heart rate from baseline on standing. The absolute maximum heart rate
on standing was also recorded.

POTS was diagnosed using recognized diagnostic criteria10 and was defined as
symptoms of orthostatic intolerance associated with an increase in heart rate
from the supine to upright position of >30 beats per minute (beat to beat) or
to a heart rate of >120 beats per minute on immediatestanding or during the
2 min of standing.


Statistical analysis

All variables were parametric and therefore comparisons between groups and
correlations were therefore made using the appropriate statistical tests. For
continuous variables, comparisons were made using un-paired t-tests, whilst
for categorical data comparisons were made using Fisher's exact test. Results
are presented throughout as mean p/m SD.


Results

Subjects

Sixty-three subjects with CFS/ME were identified via the patient support
group 'ME North East'. One patient was found not to be in sinus rhythm, two
patients were unable to stand without support, and one subject was too unwell
to attend the autonomic laboratory for assessment. The study cohort therefore
comprised 59 patients with CFS/ME (Fukuda criteria). Mean age of the CFS/ME
group was 47 p/m 12 years with 41 (69%) females. This group was compared with
a group of 52 controls matched group-wise for age and sex [mean age 50 p/m 13
years; P=0.3; 34 (66%) females]. Predictably the CFS/ME group were
significantly more fatigued compared with the control population (assessed
using the FIS; 96 p/m 28 vs. 13 p/m 21, P<0.00001).


Haemodynamic responses to standing in CFS/ME compared with controls

Although mean blood pressure responses to standing were lower in those with
CFS/ME compared with controls none of these parameters reached statistical
significance (Table 1).

When considering heart rate responses to standing, despite a baseline heart
rate that was not significantly different between the CFS/ME group and
controls (84 p/m 17 vs. 80 p/m 14; P=0.2) the maximum heart rate attained
on standing was however significantly higher in the CFS/ME group compared
with controls (106 p/m 20 vs. 98 p/m 13; P=0.02) (Figure 1).


Prevalence of POTS in the CFS/ME group compared with controls

When the diagnostic criteria for POTS were applied to both the CFS/ME and
control groups, 27% (16/59) of the CFS/ME group were found to have POTS,
which was significantly higher than the 9% (5) found in the control
population (Figure 2). This difference was predominantly related to the
increased proportion of those in the CFS/ME group whose heart rate increased
to above 120 beats per minute on standing.

There were no significant differences in fatigue severity, age or sex between
those found to have POTS compared with those CFS/ME patients who did not have
POTS (data not shown).

Increasing fatigue was associated with the increase in heart rate 30 s after
standing (Figure 3).


Discussion

This study describes for the first time, the prevalence of POTS in a cohort
of patients with the clinical diagnosis of CFS/ME. POTS is a frequent finding
in our patients with CFS/ME and we would therefore suggest that the clinical
evaluation of patients presenting with CFS/ME should include heart rate
responses to standing. The prevalence of POTS may in fact be even higher in
this patient group than that reported here, as we limited our observations of
haemodynamics to 2 min of standing. Studies are needed in order to determine
whether the prevalence may be even higher if monitoring is continued for
longer periods.

Symptoms on standing are a frequently described symptom in those with fatigue
in general11,12 and CFS/ME in particular12­21 and the physiological
mechanisms that lead to these symptoms are poorly understood. The
pathophysiology of POTS remains unclear, and includes autonomic
abnormalities, hypovolaemia or low blood volume. Furthermore, whether
management of POTS by normalization of heart rate, leads to improvements in
fatigue and the other symptoms of CFS/ME requires further study. We would
suggest, however, that our finding that higher levels of perceived fatigue
were associated with the degree to which heart rate increases on standing,
would imply that this offers potential opportunities for intervention. It is
currently unclear whether POTS is a separate clinical entity distinct from
CFS/ME or whether POTS is a particular subset of CFS/ME where a specific
group of symptoms are particularly marked. Longitudinal clinical studies are
needed in order to define this further. In the meantime, optimizing the
management of those with POTS is critical. The largest series of patients in
the literature confirm a significant symptom burden in those with POTS
including weakness, muscle aches and pains.2 In view of these findings and
without evidence to the contrary, we would strongly suggest that current
medication regimes for the management of POTS are simply symptomatic and need
to be combined with the multifaceted effective interventions performed within
the context of the CFS/ME clinical networks, thus incorporating into POTS
management the other effective components of a fatigue management programme.5
Studies are proposed within our group to compare the efficacy in POTS
patients of medication alone compared with medication with conventional
CFS/ME management.

Interestingly, our CFS/ME with POTS group differed from the demographic group
reported in the largest series of POTS patients to date. In the Mayo series,2
86.8% were females whilst in our group this was lower at 69%, and our group
did include 31% who were over the age of 50 years (mean age in the Mayo
series was 30 years). In the Mayo series, only 48% of those with POTS
experienced fatigue and a wide range of other symptoms, so it may be that
there are a variety of different POTS phenotypes, one (or more) or which
manifest as the symptom of fatigue. An alternative explanation for the
demographic differences between the two groups is related to referral bias.

Studies in adolescents suggest that POTS physiology underlies orthostatic
intolerance in the majority of those with CFS.3 Studies suggest that POTS is
accompanied with a range of autonomic nervous system abnormalities including
vagal withdrawal and enhanced sympathetic modulation, associated with
findings consistent with pooling in the lower limbs, similar
pathophysiological mechanisms as those hypothesized in a proportion of those
with the diagnosis of CFS/ME.12-14

Our clinical impression is that treatment to reduce the heart rate in POTS is
associated with improvements in fatigue.22 This needs to be formally
evaluated in randomized controlled trials in patients with CFS with a POTS
phenotype.

We would suggest that the diagnosis of POTS (a potentially treatable
condition) may be being missed in those attending services with CFS. Studies
suggest that on follow-up, 80% of those with POTS will improve, 60% are
functionally normal and 90% were able to return to work.23,24 It is therefore
important that this diagnosis is considered in all patients presenting with
fatigue and that appropriate investigations performed. We would suggest that
at the very minimum this includes haemodynamic assessment in response to
standing of patients attending CFS/ME clinical services.


Acknowledgements

We are grateful to ME Northeast for their participation.


Funding

ME Research UK; the Local CFS/ME Clinical Network.
Conflict of interest: None declared.


Figure Captions

Figure 1. Maximum heart rate (HR) attained on standing was significantly
          higher in the CFS/ME group compared with controls. Results are
          presented as mean p/m SD.
Figure 2. The proportion of the CFS/ME group (black bars) compared with
          controls (clear bars) who were found to have POTS.
Figure 3. Increasing fatigue (FIS) was associated with the increase in
          heart rate (HR) 30s after standing, in those with CFS/ME.


Table

Table 1 Systolic blood pressure (SBP, mmHg) responses in the CFS/ME
        group compared with matched controls
-------------------------------------------------------------------
                       CFS/ME           Controls           P
-------------------------------------------------------------------
Baseline SBP           130 p/m 18       131 p/m 21         0.7
Nadir SBP              112 p/m 22       114 p/m 24         0.7
Change in SBP           18 p/m 11        17 p/m 11         0.8
-------------------------------------------------------------------


References

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    fatigue syndrome: facts, hypotheses, implications. Med
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2. Thieben MJ, Sandroni P, Sletten DM, Benrud-Larson LM,
    Fealey RD, Vernino S, et al. Postural orthostatic tachycardia
    syndrome: the Mayo Clinic experience. Mayo Clin Proceed
    2007; 82:308-13.
3. Stewart JM. Autonomic nervous system dysfunction in
    adolescents with postural tachycardia syndrome and chronic
    fatigue syndrome is characterised by attenuated vagal
    baroreflex and potentiatedsympathetic vasomotion. Paed
    Res 2000; 48:218-26.
4. Karas B, Grubb BP, Boehm K, Kip K. The postural orthostatic
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5. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
    (encephalopathy); diagnosis and management. [http://www.nice.gov.org]
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6. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG,
    Komaroff A; International Chronic Fatigue Syndrome Study
    Group. The chronic fatigue syndrome: a comprehensive
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7. Fisk JD, Ritvo PG, Ross L, Haase DA, Marie TJ, Schlech WF.
    Measuring the functional impact of fatigue: initial validation
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8. Kos D, Nagels G, D'Hooghe MB, Duportail M, Kerckhofs E.
    A rapid screening tool for fatigue impact in multiple sclerosis.
    BMC Neurol 2006; 6:27.
9. Kenny RA, O'Shea D, Parry SW. The Newcastle Protocols for
    head up tilt testing in the diagnosis of vasovagal syncope.
    Carotid sinus hypersensitivity and related disorders. Heart
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10. Grubb BP, Kanjwal Y, Kosinski DJ. The postural tachycardia
    syndrome: a concise guide to diagnosis and management.
    J Cardiovasc Electrophysiol 2006; 17:108-12.
11. Newton JL, Jones DEJ. The population prevalence of
    autonomic dysfunction and daytime somnolence in primary
    biliary cirrhosis. Hepatology 2007; 47:1496-505.
12. Newton JL, Okonkwo O, Sutcliffe K, Seth A, Shin J,
    Jones DEJ. Symptoms of autonomic dysfunction in chronic
    fatigue syndrome. Q J Med 2007; 100:519-26.
13. Rowe PC, Calkins H. Neurally mediated hypotension and
    chronic fatigue syndrome. Am J Med 1998; 105:15S-21S.
14. Streeten DH, Thomas D, Bell DS. The roles of orthostatic
    hypotension, orthostatic tachycardia and subnormal erythro-
    cyte volume in the pathogenesis of the chronic fatigue
    syndrome. Am J Med Sci 2000; 320:1-8.
15. Schondorf R, Freeman R. The importance of orthostatic
    intolerance in the chronic fatigue syndrome. Am J Med Sci
    1999; 317:117-23.
16. Schondorf R, Benoit J, Wein T, Phaneuf D. Orthostatic
    intolerance in the chronic fatigue syndrome. J Auton Nerv
    Syst 1999; 75:192-201.
17. LaManca JJ, Peckerman A, Walker J, Kesil W, Cook S,
    Taylor A, et al. Cardiovascular response during head-up tilt
    in chronic fatigue syndrome. Clin Physiol 1999; 19:111-20.
18. Yamamoto Y, LaManca JJ, Natelson BH. A measure of heart
    rate variability is sensitive to orthostatic challenge in women
    with chronic fatigue syndrome. Exp Biol Med 2003; 228:167-74.
19. Stewart J, Weldon A, Arlievsky, et al. Neurally mediated
    hypotension and autonomic dysfunction measured by heart
    rate variability during head-up tilt testing in children with
    chronic fatigue syndrome. Clin Autonom Res 1998; 8:221-30.
20. Naschitz JE, Sabo E, Naschitz S, Rosner S, Rozenbaum M,
    Fields M, et al. Haemodynamics instability score in chronic
    fatigue syndrome and in non-chronic fatigue syndrome.
    Semin Arthritis Rheum 2002; 32:141-8.
21. Jones JF, Nicholson A, Nisenbaum R, Papanicolaou DA,
    Solomon L, Boneva R, et al. Orthostatic instability in a
    population-based study of chronic fatigue syndrome. Am J
    Med 2005; 118:1415.
22. Ewan V, Norton M, Newton JL. Symptom improvement in
    postural orthostatic tachycardia syndrome (POTS) with the
    sinus node blocker ivabradine. Europace 2007;
23. Sandroni P, Opfer-Gehrking TL, McPhee BR, Low PA.
    Postural tachycardia syndrome; clinical features and
    follow-up study. Mayo Clin Proceed 1999; 74:1106-10.
24. Benrud-Larson LM, Dewar MS, Sandroni P, Rummans TA,
    Haythornethwaite JA, Low PA. Quality of life in patients with
    postural tachycardia syndrome. Mayo Clin Proceed 2002;
    24:209-14.

--------
(c) 2008 Oxford University Press
(c) 2008 Association of Physicians
* * *
See also the Cheney on Cardiology article on www.DFWCFIDS.com

Game, Set, Match

I have repeatedly been challenged on my statement that until the HIV virus was discovered, AIDS was considered psychiatric in nature. 

I have now provided a dozen quotes from a variety of sources  http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/08/22/heres-the-proof/2169, with not a single quote provided by the other side to support their assertion that I am wrong.  If my statement is false, then there are a lot of people who've heard and cited to the same myth, some of them with important titles or initials after their names.

Therefore, by a score of 12-0, this matter is now set to rest once and for all, and future demands for proof will be ignored, since adequate proof has now been amassed to satisfy me that the information I'm basing my statement on is accurate.

Of course, just as we've seen with the tons of medical evidence that CFS has biological origins, there are some people too stubborn to accept reality, and will continue to dispute a statement long after it's been proven to the satisfaction of everyone else, rather than change their minds.  And I will allow them to continue to post here, so that the whole world can see the identities of these people who should not be allowed anywhere near CFS patients.

CFS/ME has a physical cause

http://www.therapytoday.net/index.php?action=viewLetters&magId=19

ME has a physical cause

I read with interest, but also concern, the research paper on counselling
people with ME (CPR, June 2008) and the article 'Living with ME' (therapy
today, June 2008). I take issue with the idea that ME is a disputed
condition. What may be disputed is how many illnesses are currently hidden
in the catchall diagnosis of ME/CFS.

The World Health Organisation classified ME as a neurological disorder in the International Classification of Diseases (ICD) in 1969. ME Research UK states that 'ME is a neurological illness with evidence of immunological and toxicological signs, clear disturbances to the neuro-endocrine stress axis, impairment of the autonomic nervous system, irregularities in the perfusion to the brain and indeed to the peripheral vascular system confounded by red blood cell abnormalities with recent evidence suggesting a hypercoaguable state - all of these extensively documented findings' (Dr V A Spence, ME Research UK website, November 2000). Dr Spence says that people with CFS have poor immune activation and poor cellular function, and that it is often a disease with remission-exacerbation cycles.

While I believe that it is likely there are physiological and psychological
aspects to all illnesses, to treat either ME or CFS with only CBT and graded
exercise is to ignore all biological abnormalities. Stress, for example, may
be a contributory factor in some heart attacks and some cancer. However, the
first port of call in treatment is to deal with the physical issues, not to
ignore these and only offer CBT. The sufferers of these illnesses may feel
they could benefit from counselling, but everyone would expect the physical aspects of the illness to be treated. This is, by and large, being denied to sufferers of ME and CFS.

The psychological and medical worlds should learn from history. ME and CFS are not the first illnesses to be claimed to be psychological in the first years of their appearance. In every case, this approach takes away money from research into the potential physical causes of the problem for years.
My mother can recall children being beaten and made to stand in the corner
after having an epileptic fit because they were seen as being attention
seeking. Not much has changed. In more recent years, children suffering from
severe ME have been thrown into swimming pools in the belief that this would
cause them to start swimming and thereby prove to them that their inability
to move had been all in the mind.

CBT is a kinder treatment than that. However, to read the article in CPR where it is quoted that people with ME who are 'psychologically minded. are more likely to do better with CBT', is verging on praising/blaming the
sufferer for whether or not they recover. At the present time, perhaps we should be investing more money into understanding what ME and CFS actually are before we pass judgement on whether or not the sufferers have got the right attitudes.

Barbara Jeffries


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


ME patients struggle to be heard

Thank you to the authors of the research paper 'The experiences of
counselling for persons with ME' (CPR, June 2008) for giving a voice to ME
patients and introducing a breath of fresh air into the ME/CFS debate. The
research is timely as the guidelines set down by NICE that CBT be the first
therapy of choice for ME is contested by ME patient groups and those engaged
in biomedical research into ME. On 19 June an ME patient won a significant
legal victory after a leading judge declared it 'in the public interest' for
the High Court to rule on claims that treatments being offered on the NHS
are 'potentially fatal'. The case will now go to judicial review. The two
treatments in question are CBT in conjunction with GET (Graded Exercise
Therapy).

The level of protest represents a landmark in the continuing struggle with
which ME patients are engaged in order to have their views heard and
respected and, as the research paper intimates, underlines the need for
therapy practitioners across the board to be mindful of their approach in
working with clients who have ME. The research paper is a useful pointer to
the direction that CBT needs to take if it is to be acceptable and helpful
to ME patients.

I would like to expand upon the political backdrop to some words that were
highlighted in a summary of the above piece of research in therapy today:
'People living with ME are likely to react badly to any suggestion that psychological factors play a major part in either onset or maintenance [of their condition].' There are cogent reasons why the ME patient population reacts in this way and these have little to do with a defensiveness around the area of the links between psyche and soma.

I have had severe ME since 1989, a condition that devastated my life on many
levels, including having to give up my career as a psychoanalytic
psychotherapist. I would not have had an awareness of the condition if I had
not had two clients, at the time of becoming ill, who were suffering from
ME. These clients were so clearly physically ill that it never occurred to me to translate their illness as psychological in aetiology and the basis of
our work was to aid with adjustment to the illness and the considerable
losses attached to it.

I can best describe my own experience of contracting ME as like having been
in a car crash. Within six weeks of contracting a throat virus, I went from
living a full, challenging and happy life to being completely bed-ridden -
unable to walk, in extreme pain, and suffering from total brain fog/fatigue.
Like every other ME patient, I was desperate to get back to my 'normal' life
but despite every endeavour this never happened. As the research paper
indicates, pacing and self-management is the main strategy that enables me
to live a life beyond being totally bed bound, though I do use a wheelchair
24/7.

However, I was extremely fortunate in having a GP who knew me well and it was his certainty that whatever ailed me was physical in aetiology that saved me from having to enter the nightmare world that many ME patients have entered; where their 'truth' about their illness - whatever started it, whatever maintains it - is constantly challenged by practitioners who have been indoctrinated by a view of ME that maintains it can be vastly improved using certain psychological techniques (a version of CBT) and GET.

The above predicament for ME patients normally arises when faced with a
practitioner who adheres to the banner heading of 'aberrant illness
beliefs'. This banner was hoisted during the late 1980s and throughout the
1990s by the psychiatric lobby regarding ME. Sadly this lobby continues to
siphon off a large chunk of the funding that is long overdue in the area of
biomedical research. I can think of no other neurologically defined
condition where this is the case. ME has become a political as well as a
social and health issue, and in decades to come will probably be highlighted
as an example of how muddied the waters become when government directives
based on financial considerations, and the rigid views/beliefs of
individuals in positions of power within the health system, take precedence
of patient testimony.

Every article and research paper that is positive towards the testimony of
ME patients needs to state that ME is recognised by the World Health
Organisation as a neurological illness - comparable to MS, Parkinson's and
other neurological disorders. This fact was a glaring omission in the NICE
resume. Every researcher needs to state with clarity that the only criteria
that allows for the whole spectrum of severity and neurological disorder
when diagnosing ME is the Canadian criteria spearheaded by Bruce M
Carruthers (who is referenced in the research paper). Many argue that any
other selection procedure (for example the commonly used Fukuda criteria)
allows all manner of fatigue states to be included in the statistics of ME
research, and this has always led to gross oversimplification and skewed
results regarding treatment and long-term prognosis.

There is a huge divide between the work and opinion of Carruthers and what
has become known as 'The Wessely School' (also heavily referenced in the
research paper). Because this divide has had such an impact on patients,
both at the level of treatment on offer and how the condition is viewed
culturally, and most significantly the outcome for disability benefits, it
is useful for any counsellor involved with a client coming to terms with ME
to have a working knowledge of the broader issues. A good place to start is
to become familiar with the work of ME Research UK (www.meresearch.org.uk ).
Here one can read about the sterling work that is taking place within
biomedical research - work that is a corrective to the overt presence and
influence of the biopsychosocial model.

If, as a patient group, ME patients come across as vociferous in their views, it is because they find themselves in the peculiar position of having to persuade doctors/mental health practitioners that they are no more depressed than the average human being struggling with a debilitating illness, and in the main would like medical treatment based on a physiological understanding of the condition. It may be that there is a 'pure' ME as the research paper suggests - patients who are severely neurologically affected and are placed outside all of the other sub groups
who have been placed under the collective label ME/CFS - but even if this
proves to be the case, the role of counsellors does not change. Members of
the profession are called upon to work with compassion and integrity,
assisting clients who range in age from the very young to the elderly, to
come to terms with grief and loss, and hopefully to re-constitute a life
that is still meaningful despite its limitations.

Paula Burns
www.paulaburns.co.uk

* * *

As Burns states, it is clear to psychiatric experts that this is a PHYSICAL illness.  Every trained counselor, psychologist and psychiatrist who has examined me has stated that I lack the emotional symptoms necessary for a psychiatric diagnosis, and it sounds like the flu to them.  And when this opinion is taken back to the MD or the judge, who has little or no psychiatric training, he nonetheless substitutes his own imaginary "expertise" for the years of training and experience of the real experts.

Yes, there is some symptom overlap between CFS and depression.  It is quite common for patients who have a virus/fever to spend a great deal of time in bed and to have difficulty concentrating ... because of the fever and the physical toll of fighting the illness, not because they're depressed.  However, there are many symptoms which don't overlap, and there, I have the ones that point toward CFS, and do not have the ones that point toward depression: I don't cry, I'm not suicidal, and I don't have low self-esteem, as evidenced by the fact that I have told off a number of doctors ... I don't buy into their nonsense that they are intelligent men and I am stupid by virtue of being female.  I'll put up my SAT score against theirs any day. 

The truth about my illness has been challenged from the very first by doctors who refused to acknowledge that a virus can, in fact, have long-term consequences, and were annoyed that I steadfastly kept repeating the truth "all my symptoms started with a high fever and flu-like illness" instead of buying into their brainwashing that all my symptoms were somehow related to my marital status (I've had the same symptoms before, during and after my marriage, therefore it makes no sense to say that my symptoms are somehow related to my husband, because I originally got sick before we got married, when he exerted no control over me whatsoever).

If this is what it takes, I'll repeat it until I am blue in the face, and in ever-smaller words in hopes that it finally gets into their little pea brains: I have a post-viral neurological condition which has much in common with MS.  MS is not caused by marital status, and neither is what I have.  Counseling does not fix MS and counseling will not fix what I have.  It is a post-viral neurological condition and no one with psych training has ever EVER found reason to diagnose me with depression.

Which brings me to my other hobby horse: MDs should not be allowed to place psychiatric diagnoses in the records unless and until that diagnosis has been made by a competent, qualified, psychiatric professional.  I have as much psych training as the average MD and I would never consider myself sufficiently expert to make a psych diagnosis.  I might urge a friend to seek out a mental health professional because of what I see, but I'd never think I'm qualified to say "you're depressed, here's some Prozac" just because I took Psych 101 and recognize a few symptoms.  Unfortunately, too many CFS patients have unwarranted psych diagnoses in their records made by MDs who found it easier to make an erroneous psychiatric attribution than to tax their brains to make the correct medical diagnosis.

And when I made sure that I fed one doctor every single symptom that proved that it was not the depression that he wanted to diagnose, he ignored me, and later said "nothing you said made sense".  He's right -- it didn't make sense in the context of depression, because I'm not describing depression.  If he'd known the first thing about CFS, my description of the symptoms would have led him right to it, but he knew nothing about my condition.  Instead, he slapped on an inaccurate psychiatric label and then blamed me when psychiatric treatment didn't cure a post-viral neurological condition that is neither caused nor cured by the mind. 

Blaming the victim is only a solution when you want to avoid your own responsibility in creating the mess.

I'll agree with the first letter-writer that there are a lot of people wrongly diagnosed with CFS, which again goes back to doctors who don't know the first thing about it.  Too many of them are under the impression that every case of chronic fatigue is Chronic Fatigue Syndrome.  They don't know the diagnostic criteria, they don't know there are symptoms other than fatigue.  But again, the problem lies not with the patients, but with the doctors' ignorance.  The patients didn't diagnose themselves: some doctor who did not know what he was talking about felt compelled to make a diagnosis, even a wrong one, rather than refer the patient on to specialists who could make a correct diagnosis and get the patient into the correct treatment.

Early treatment is the key to reversing CFS.  The longer appropriate treatment is delayed, the less likely the patient will have a full recovery.  Some treatments have been proven dangerous, landing patients permanently in wheelchairs or even bedridden, yet those treatments continue to be prescribed by doctors who find themselves unable to say "I don't know" and seek advice from someone who does know.

As Dr. Bruno says "In this new millennium medicine must not be about doctors’ egos..." The patients must be listened to and taken seriously. Writing down exactly what the patient tells you is more valuable to a proper diagnosis than writing down what you wish the patient would have said.  Blaming the patient must stop.  Wasting patients' irreplaceable time and money with wrong treatments for the wrong condition is simply unconscionable.  If you don't know, say so, and find someone who does.