Squinn Test: September 2007

Sunday, September 30, 2007

Rearranging all of the Puzzle Pieces

Activist LKW wrote this in response to the problems created by so many things having been subsumed into CFS (which now seems to have been expanded to include fatigue from any cause, physical or psychological, and not only the original physically debilitating post-viral neurological condition described in the Incline Village outbreak). Certainly, sorting out the various causes and focusing research on only the post-viral version would be more helpful in research than those researchers who lump together "sudden onset" (i.e., viral) with "gradual onset" (i.e., more than likely psychological).

Rearranging all of the puzzle pieces

If you walked into a room and saw a pile of puzzle pieces on the floor,
most people's inclination would be to start sorting them, then reassembling
the puzzles. If, as you sorted, it quickly became apparent that multiple
puzzles were involved, you'd expand your space and start making piles,
matching like with like.

What I see with so many patients all over the world in this CFS, CFS/ME.,
CFIDS, ME/CFS and ME mess that now exists is a sort of desperate
clutching at anything/everything (ideas, names/terms/definitions) and then
interchanging them all, at will.....

To put it another way, it's like everyone is so desperate that they are
willing to latch on to anything/everything they can grab JUST IN CASE it turns out
to be important one day, or a small piece of their puzzle, or the answer....

And they never let go of anything ever again.

It's like they are taking the pieces of 20 puzzles all thrown together onto
the floor in a pile and are now trying to make random pieces of each fit
together, by golly, by hook or by crook - even if the colors are wrong or the edges
don't line up. They will smoosh and hammer and pound those pieces into a puzzle,
so help them! They WILL assemble a puzzle! It doesn't matter what the end
result looks like - it doesn't have to look like any of the originals on the box
covers or be pretty or depict a specific image or scene, or make sense or be neat
and clean with well-defined edges. Oh no...nothing so systematic or
practical....

These are desperate patients, without scientific backgrounds but perhaps
with brain damage, who are sick and tired of being sick and tired. And I oh, so,
get that. And more. But their approach is not bringing anything to fruition.
It's just making a bigger and more confused mess.

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

-->What they SHOULD be doing is seperating out the puzzle pieces by type
(individual puzzles, according to the picture on each box) and assembling
each seperately. Then viewing the results and determining what each still needs
to complete it.

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

Everything was thrown together 20 years ago, and the mess remains. ~I~ am
trying to help seperate it all out and start putting it back together properly. I have
always been a synergist. Instead of attacking me, or dismissing me, you
could start helping. Or if you're not willing to do that, then at least step aside and
give me--and others like me--room to work. Because we are trying to do something that
will benefit the masses.

And oh, yeah - let go of all of the the Lego and Matchbox and Barbie pieces
already, as they were just lying on the floor when the puzzle pieces were
dumped and so have no relevance. They don't go with the puzzles!!!!

~

Monday, September 24, 2007

Chronic Pain

How one man conquered chronic pain - CNN.com

Neurologist "Oaklander sees many patients whom she describes as "bouncing around the health care system" for years with no firm diagnosis. She divides chronic pain sufferers into two groups. "One is the group that has an ongoing cause of their pain," she says. "The classic example of that is patients with arthritis. They have pain in their joints every day." Much more difficult, she says, is the second group: "Patients who have chronic pain without an obvious cause of tissue injury."

Connick falls in the second category, Oaklander says, noting that X-rays show broken bones, but not nerve damage. "It was only many years later when he was examined by a neurologist that his underlying nerve injury was identified and able to be treated," she said.

Oaklander concludes: "If you have chronic pain, don't take no for an answer....I think it's important for chronic pain patients to keep a sense of purpose, optimism and hope despite the indignities that many are subjected to."

* * * *

The problem with many doctors is that they don't consider nerve damage as a source of chronic pain. They don't see anything that would explain it, so they consider the patient is exaggerating, perhaps that the patient wants pills to party with. Or are concerned that if they prescribe pain pills, they'll be investigated and lose their license. Or fob you off with some baseless concern that you'll become an addict (statistically, less than 1% of patients do, and most of those can be identified in advance because they have Addictive Personality Disorder) -- you wouldn't call a diabetic an "insulin addict" for taking their pills every day in order to function.

I was refused pain pills for years, despite sometimes reporting level 10-of-10 pain, because they just couldn'tsee that my arthritis was bad enough to produce a level 10. They'd tell me to go take Advil, which is an anti-inflammatory and works on arthritis, but Advil is useless on neurological pain. One would assume that anyone with enough intelligence to get through medical school would know that fact.

Obviously, taking a hot bath every hour or two is not something you could do while working full-time, but that was not registering with the doctors who were telling me to suck it up and go back to work. Since I work at home, I could do that, and ThermaCare wraps came on the market right about the time that I went through my period of worst pain. Still, no patient should be left to endure nonstop Level 10 pain for months with nothing but heating pad, hot bath and Advil. It's inhumane. (The only thing that kept me sane in that time period was that I was on an experimental sleeping pill that was strong enough to put me to sleep and keep me asleep; I could take it at 5 PM if the pain was too bad and sleep till 7 AM. If not for that reliable escape mechanism, I don't know what I would've done -- maybe gone over to the hospital and slapped a couple doctors. ( )

I then went to a seminar given by a local pain management specialist who made it clear that even as little as 48 hours of nonstop pain can cause observable physical changes in the Central Nervous System, and therefore no patient should be told to just suck it up, not even for a couple days. (His theory seems to be that these objective physical changes resulting from untreated pain might be at the root of fibromyalgia.)

As Oaklander says, "don't take No for an answer". If your GP is afraid of repercussions against his license for giving you pain pills, then demand a referral to a neurologist or pain management specialist, who are less afraid because the AMA expects them to be writing a lot of prescriptions.

My quality of life improved significantly when I found someone brave enough to give me a prescription for one pain pill at bedtime. During the day, I can use baths and heating pads, but you're not supposed to leave a heating pad or ThermaCare on while you're asleep. Capsaicin helps on small areas, but not for full body pain and not on any part that might come near bodily orifices. (According to a Sandy Koufax biography, if the trainer put Capsaicin on Koufax with his bare hands, his wife made him "sleep with his hands outside the blankets". You only need to touch one of your sensitive spots once to understand why. It burns like hell on my knee, I don't even want to know what it would do if my arm got near my face while I'm asleep.)

Thanks to one Tramadol at bedtime, I can sleep, and that means I wake up feeling less like I've been hit by a truck and more like a human being. There's no telling how good I would feel if I had gotten this prescription 7 years ago when I first asked for something to ease the pain so I could sleep through the night.

Tags: pain, neurology, chronic pain, medication

Patient Rights: Informed Consent

INFORMED CONSENT

Professor Roger Homan – Ethical Advisor to reMEmber

The principle of informed consent is nearly sixty years old. During the
second world war internees in concentration camps had been used as
involuntary subjects in medical research; some, for example, had been
partly frozen in research on the effects of frostbite.

At the end of the war the Nuremberg Code offered the formula that has
now become standard not only in medical research but in therapeutic
procedures also. In its current applications, it requires that patients
should be told of the nature of any procedure - including purpose,
risks, and consequences – and that they should be given the option of
declining to participate.

Thus the term informed consent has two components, the principle of
explanation and that of voluntariness. In a litigious society the
neglect of either of these professional obligations will have different
consequences. A physical procedure without the consent of the patient
might be construed as an assault and could be prosecuted in a criminal
court. The failure to give proper information, on the other hand, might
be thought an act of negligence: a patient who, for example, is in some
way impaired as a consequence of treatment without having been told that
it was always a risk could take action for damages within the civil
courts. Thus the code for dentists speaks not of informed consent but of
‘information and consent’.

In practice neither informing nor the securing of consent is a
straightforward matter. A patient may be unable to comprehend the
technical detail of complete information. It could even frighten
patients from undergoing a beneficial procedure. I know myself to have
been terrified by the lists of possible side-effects that accompany
medications collected from the pharmacist and have been inclined to
tolerate the condition being treated rather than take statistically
insignificant risks. Information is necessarily selective: a prudent
selection delivered in a calm manner by a consultant who seems to know
what he or she is doing may be more likely to secure consent than a
thorough appraisal by a nervous medical student.

The more information given, it seems, the less likely is the patient to
consent.

The right to give or withhold consent implies the right to know. This in
turn suggests an obligation on the part of professionals to inform. But
there is also an entitlement not to know and this is very difficult for
professionals to judge. Some years ago I suffered a paralysis from which
I was told with helpful assurance that I would recover and I worked at
physiotherapy and other means in the confidence that I would do so.
Nowadays patients are able to discover the mortality rate and limited
probability of recovery from the world wide web and can resign
themselves to a less active future. It helped me to be spared that kind
of intelligence!

Again, some may have read in the newspapers of a recent case in the
United States in which a young woman entered hospital to donate a vital
organ to her father who otherwise would have died. Obviously, blood
groups were compatible. Both survived the operation. However, it
transpired that she and he were not biologically related. The inference
was that the mother had an affair of which neither the donor nor her
supposed father had been previously aware. They had the right to know
and the doctors had the obligation to tell them. But the consequences of
that obligation might have been destructive. Never mind what they
decided: we merely recognize the weight of the burden placed upon
professionals by the right to be informed.

Patients and Medical Research Ethics
Bill Kent –Member of Brighton East Research Ethics Committee and
Secretary to reMEmber

In the NHS medical research is allowed only with the permission of the
Research Ethics Committees (RECs). The people conducting the research
have to satisfy the RECs that patients have been fully informed about
the proposed research. This includes any adverse effects and that they
know they can refuse to take part or withdraw at any time. This is a
safeguard to protect patients.

Posted by Janice Kent – Director, reMEmber
HYPERLINK "http://www.remembercfs.org.uk/"www.remembercfs.org.uk
me_cfs@hotmail.com
Part of our website is being repaired, sorry!

One problem that many CFS patients have is that they are denied their right to REFUSE a specific treatment and request something else. I repeatedly made it clearthat I did not want anti-depressants, psychiatrists had said I was not depressed, anti-depressants are proven useless against CFS. And left the appointment with a prescription for anti-depressants anyway because the doctor wouldn't let me refuse a treatment I didn't want. (Of course, I did have the option of not filling the prescription, but that left me without any treatment for what truly ailed me.)

On one occasion, I repeatedly advised the doctor that the prescription he had just written was for something that I had been told by doctors AND pharmacists not to take because of a prior reaction to a related medication. My attempt to refuse this prescription was rebuffed with assurances "it'll be fine". A few days later, I showed that prescription to another doctor, who reiterated what I'd been told by multiple doctors and multiple pharmacists, with a blunt "are they trying to kill you?"

I may have legally had the right to informed consent, but when I tried to exercise it, I was bullied, coerced, and left with no alternative but the prescription that the doctor wanted to make initially. A right to refuse treatment under informed consent is useless if there's no reasonable alternative offered. It was never "OK, if you don't want to take anti-depressants, how about a sleeping pill?" It was always "take the anti-depressants and if they don't work, THEN we'll talk about trying something else." Except that at the next appointment, it was the same old argument again, with only the name of the anti-depressant changed, and assurances that if the first three varieties didn't work, maybe the fourth would. Never mind that I had research backing me up that no variety of anti-depressants will cure a virus, I could not have treatment for any of my symptoms -- not the intense pain, not the severe insomnia, not the digestive problems, and certainly not an anti-viral medication -- until they had tried every last anti-depressant on the market.

I AM now permanently impaired as a direct consequence of treatment because their insistence on treating me for something I don't have, while ignoring the proper treatments for what I was previously diagnosed with by a specialist, allowed me to deteriorate and suffer physical damage. It should be a surprise to no one that a disease left untreated WILL get worse.

It's truly a "fate worse than death" to know that you'll never work again because you put your faith in doctors who were too stubborn to consider an alternative, and because your attempts to put Informed Consent into action were refused. It's why I speak out publicly -- to make sure that other patients don't suffer the same fate.

If your doctor will not consider anything other than an anti-depressant for your CFS and/or fibromyalgia, CHANGE DOCTORS. Don't do what I did and think that you will eventually prove to them that they are wrong and you are right -- it's impossible, and it wastes valuable time in getting prompt treatment before the virus does permanent physical damage.

My crucial mistake was in believing their assurances that "next time" (and "next time" and "next time" again) they would listen to me (and my prior specialist) and prescribe what I wanted instead of first wasting years trying one useless anti-depressant after another (and then being accused of "not wanting to get better and have to go back to work" when I reported that the anti-depressants made me sicker ... which is, in fact, a normal side effect of taking drugs for a condition you don't actually have).

And if you do suffer damage from a treatment you were not allowed to refuse, remember that you do have legal rights, but you have to act quickly. Don't let the doctors and their "next time" promises string you along until your time to sue has expired. My doctors knew exactly how long they had to make empty promises until I lost my right to apply for State Disability, and to run out the clock on my medical malpractice claim. All they had to do was to keep sounding sincere in promising I would get what I wanted at my next appointment if I'd just humor them one more time, knowing that I was not likely to change doctors and re-start the process when I was supposedly "that close" to getting what I asked for.

Thankfully, a doctor I really could trust asked that question "are they trying to kill you?" and convinced me that I was being played for a fool in an attempt to eliminate what they knew could be a massive medical malpractice claim against their medical group, or I might still be falling for their promises of "next time" (or have taken something that resulted in death).

Tags: informed consent, malpractice, damages, legal, criminal, right of refusal, medical, medication

An Original CFS Patient Speaks Out

http://www.bmj.com/cgi/eletters/335/7617/411

Latest eBMJ responses on White et al
~~~~~~~~~~~~~~~~~~~~~~~~

Imprudent Neglect of CFS History

15 September 2007

Erik Johnson,
Incline Village NV 89450

The proponents of various reinterpretations of
Chronic Fatigue Syndrome appear concertedly
neglectful that CFS has a verifiable history which can
be traced back to a very specific time and place -
and a particular pivotal phone call made by Dr
Peterson which set the entire process in motion.

It could have been different. The CDC might have
responded to any of a number of different doctors
who were reporting the mysterious illness across the
USA, but as it happened, Lake Tahoe seemed like a
more desirable place to conduct an investigation. By
such quirks is history determined.

The initial identification of the epidemic to the direct
creation of the partial symptom collation which was
called CFS can be traced in an unbroken chain of
events performed by specific people who are still
accessible.

There is no need for any confusion about what CFS
originally was meant to describe, because the story
is accurately depicted in Osler's Web, reiterated by
Dr Peterson's contribution to the Canadian Consensus
Guidelines, and the individuals involved are mostly
still alive, and able to answer anyone who cares to
ask about their experience.

When a group of people is selected to become
prototypes for a syndrome, does it not seem
spectacularly imprudent to conspicuously ignore them
and turn the illness into something else?

-Erik Johnson
Incline Village 1985 Yuppie Flu survivor
1988 Holmes et al CFS study group participant
Competing interests: None declared

This is, unfortunately, the history of CFS in a nutshell. Someone with the power to do so, so desperately wanted it to be merely hysterical depressed menopausal hypochondriacs that when it became apparent that patients like Erik and the school children in Lyndonville could not be written off as "menopause", the symptoms that differentiated CFS (or ME, if you prefer) from depression were quietly removed from the diagnosticcriteria. Voila, by redefining the illness into something else entirely, Straus & Co. succeeded in getting their way: lump a bunch of patients whose actual problem *is* menopause/depression/hypochondria in with those of us who had a post-viral system collapse, and hope that no one notices the deception which "proves" Straus's initial uninformed statements.

Others circulated the misinformation that CFS patients were reporting every symptom under the sun, which proved that we were just imagining things, or faking to avoid work. Small problem, those of us who really *do* have CFS (or ME, if you prefer) were reporting the same symptoms across the board, even without knowing other patients. I didn't know anyone with CFS when I got sick, and wouldn't "meet" Erik for another 15+ years, yet I reported the same symptoms as Erik, hundreds of miles away. That's either an incredible case of ESP, or proof that we have the same disease, because it's statistically impossible that we would choose the same symptoms from a list of zillions, and that thousands of other CFS patients would also choose the same symptoms from a list of zillions, if we really were "just faking".

Yes, there is a long list of symptoms possible in CFS, but eventually a neurologist clarified that every single one of them could be caused by Central Nervous System dysfunction -- there was that connecting link that made it all make sense. Except to those who were trying to re-define it into something else entirely for purposes of their own, and didn't want to hear that there was a logical explanation for the cornucopia of symptoms. This information was swept under the rug until the internet made it possible for people (like me) to make it public without CDC/NIH or the AMA having the opportunity to edit it out before publication.

They've now succeeded in defining CFS in such a way that neither Erik nor I really fall into the category any more, but they've also eliminated in the US the ME diagnosis that would encompass us. Like the fabled Man Without A Country, Erik and I (and many more like us) have become Patients Without A Disease, as the very patients who were the core of the investigation have been defined out of the disease that was created for them.

That's the real "inconvenient truth" -- that patients who were supposed to be the epitome of the disease called CFS now find that the "experts" say they musthave something else, but have taken away the historical Myalgic Encephalomyelitis diagnosis that would match our symptoms, leaving us adrift on a sea of rewritten history.

Tags: CFS, deception, neurology, Central Nervous System, Incline Village, definition, inconvenient truth

Sunday, September 23, 2007

Data Gathering

The followers of the Wessely-School, who use CBT
and specially GET to 'cure' ME/CFS patients, try to
select patients, who don't really suffer from
ME/ICD_CFS.

We know their tricks; some examples:

*Sharp's (UNUM's) Oxford criteria.
*Fukuda/Sharp's (UNUM's) CDC criteria
1994, with which it is not necessary to
suffer from post-exertional malaise. So if
they only choose patients without this
hallmark for their studies, they can get
fantastic results, because they don't study
ME/ICD_CFS at all.
*The use of the already diluted Fukuda/
Sharp's (UNUM's) CDC criteria 1994,
WITHOUT the symptom criteria, like they
did in Nijmegen (Netherlands) - mean
Karnofsky scores 72 ! (Prins, Bleijenberg et
al. Lancet, 2001).

In spite of this we know from many stories and
research, that there must be a lot of ME/ICD_CFS
patients, who became worse, bed- or housebound,
or perhaps even died after this 'therapy'.

The important article *Informed Consent to Medical
Treatment* posted on Co-Cure by Janice Kent:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0709d&L=co-cure&T=0&P=1597

Brought back an idea, which is already cooking in my
fragmented brain cells during a long period:

When there would come organisations, which gather
the data of all these patients (even on an
international level) and start legal proceedings
against these 'surgeons' and perhaps also the
governments, which tolerate these kind of 'cures', it
will soon be finished with the 'biopsychosocial model'
of *CFS/ME*.

I suppose much sooner than with all advocacy, which
hasn't helped during the last 25 years.

Jan van Roijen

* * *

This has long been one of the problems with "research" -- those who want to prove that CFS is purely psychological stack their studies with patients whose problems truly are psychological (i.e., lacking the physical symptoms such as the exercise intolerance/post-exertional malaise, digestive problems, fever, sore throat, etc.), and by studying people who have "chronic fatigue" but not post-viral Chronic Fatigue Syndrome, they prove what they want to prove, which is of no use to those of us who have something other than what patients in their research sample have.

These are people who supposedly had the intelligence to get through either medical school or an advanced degree in psychology, so you have to assume that their "stupidity" is intentional, and not an actual inability to comprehend that (small letters) chronic fatigue, a symptom, is not the same thing as (initial caps) Chronic Fatigue Syndrome, a specific collection of symptoms of which fatigue is only one of many.

The real problem seems to be people who reach a conclusion without learning the facts, and then refuse to listen to any facts which contradict their conclusion. It may be stubbornness, or there may be a financial motive (getting the National Health Service to require all CFS patients to see a psychologist for CBT), or simple prejudice against women (the belief that all women don't want to work, espoused by several of my doctors who assumed that I wanted to be a housewife and couldn't get my husband to agree to support me).

And then there are those (like my ex-husband), who put their faith in experts to the point that they disbelieve what they see with their own eyes. Before we went to the first doctor, my husband was convinced that I was really sick: he felt the fever, saw the daily vomiting, heard the daily diarrhea, saw me collapse with no muscle strength to even sit up. After the doctor's verdict that the only thing wrong was that I didn't want to work, my husband persuaded himself that he didn't see these objective symptoms; the doctor said I wasn't sick, and therefore, none of these symptoms existed.

Thankfully, while my husband was so weak-willed that he discounted his own experience in favor of what the doctor told him to see, my boss was not. He saw plenty of objective evidence of physical illness and would not let me accept the diagnosis of "nothing".

Unlike the doctor who had first met me after I got sick, my boss had something to compare it to, and was well aware that I had not gotten married with the intention of becoming a housewife: I had married a full-time student with the understanding that I would work full-time while my husband was in school. My boss knew that I was not that stupid (or manipulative) that I would marry a student and then fake an illness to force him to drop out of school. The doctor seemed to have missed the entire concept that I was the primary breadwinner, lost in the fog created by his automatic assumption that all women want to be housewives and will do whatever necessary to get their husbands to "let" them quit their jobs.

It's not the age of the doctor that's the problem -- a dozen years later, I got the same preconceptions from a doctor who wasn't even in med school when I first got sick. He, too, assumed that I was unhappy having to work after the divorce and wanted full alimony so I could be a housewife. (And made the same comments to a friend with a different disabling health problem; both of us had been the primary breadwinner throughout the marriage and had ex-husbands not in a financial position to pay any alimony at all, much less enough to pay all the bills.) While that might be the goal of some women, it obviously is not the goal of careerwomen who were the primary breadwinner in the marriage -- if my goal had been to be a housewife, I would've married one of the lawyers I dated, not a full-time student!

Tags: CFS, research, post exertional malaise, exercise intolerance, symptoms, difference, prejudice, preconception

Friday, September 21, 2007

Misdiagnosis more common than you think

http://www.cnn.com/2007/HEALTH/09/19/ep.misdiagnoses/index.html

Has your illness been misdiagnosed?

Story Highlights
Red flag may be when your symptoms don't match a diagnosis
Other signs may be when a diagnosis is based purely on a lab test
Your doctor attributes common complaints to an uncommon ailment
Your diagnosis usually involves a test you never received

VIDEO

<DIV id=cnnHighLightTrigger _extended="true"> <DIV class=cnnContentContainer id=cnnTxtCmpnt style="DISPLAY: block" _extended="true"> <DIV id=cnnSCFontButtons _extended="true"> <DIV id=cnnSCByLine _extended="true">By Elizabeth Cohen
(CNN) -- In June 2004, Trisha Torrey found a golf ball-size lump in her torso. A surgeon removed it and gave her the grim news: cancer.

And it wasn't just any cancer but an extremely rare type of lymphoma.

"The oncologist told me that if I didn't begin chemo immediately," says Torrey, "I would be dead by Christmas."

The 52-year-old marketing consultant says she was petrified. But something in her gut told her the diagnosis was wrong.

Her doctor assured her it was right: two labs had confirmed the subcutaneous panniculitis-like T-cell lymphoma.

Against her doctor's orders, Torrey delayed chemo and went to another oncologist, who sent a tissue sample to the National Institutes of Health. The result: Torrey never had cancer.

The lump was a harmless fatty growth. "On the one hand, I was overjoyed; on the other hand, I was just furious," Torrey says.

She couldn't believe she had been on the verge of having chemotherapy for nothing. What was it in Torrey's gut that told her the diagnosis might be wrong?

It's a lesson worth learning because misdiagnoses are more common than you might think: A 2005 study in the Journal of the American Medical Association says autopsy studies show doctors are wrong 10 percent to 15 percent of the time.

Here, from Torrey and from medical experts, are some red flags -- five reasons for suspecting your doctor might have made the wrong diagnosis.

1. You don't get better with treatment

Sometimes doctors stick to a diagnosis even when multiple treatments aren't working.

As vice president for loss prevention and patient safety at Harvard's Risk Management Foundation, Bob Hanscom remembers one particular lawsuit against Harvard doctors. A young woman complained of stomach and chest pain. Her doctor prescribed a medicine for gastric reflux. When it didn't work, a second doctor prescribed another drug for gastric reflux. It also didn't work. The woman ended up in the emergency room with acute pancreatitis, which eventually caused kidney failure.

She survived but will be on dialysis the rest of her life.

"In her deposition, she said nobody was listening to her, so she kind of gave up," Hanscom says. "When I read that, I thought, 'Oh God, I wish you hadn't given up.' "

2. Your symptoms don't match your diagnosis

This is where the Internet comes in. You don't have to be a medical professional to Google your diagnosis.

For example, let's say a doctor diagnoses you with tendinitis. Looking it up, you can find out it usually lasts about six to 12 weeks, according to Dr. Saul Weingart, an internist and vice president for patient safety at Dana-Farber Cancer Institute in Boston, Massachusetts.

If you're still in pain beyond that time, the doctor may have made the wrong diagnosis.

3. Your diagnosis is based purely on a lab test

The reality is that labs make mistakes. In Torrey's case, she says two labs made mistakes. When lab results are the sole criteria for a diagnosis, that can be a red flag, says Torrey, who works as a patient advocate. Another red flag is when a diagnosis of a rare disease comes from a lab that doesn't specialize in that disease, Weingart says.

4. Your doctor attributes common complaints to an uncommon ailment

Torrey says her doctor said her night sweats and hot flashes were caused by the extremely rare lymphoma. Actually, they were signs of menopause.

5. Your diagnosis usually involves a test you never received

This is where the Internet comes in handy again. If you find out a specific test can determine the diagnosis you've been given, but you were never given that test, that's a reason to head back to the doctor's office armed with questions, says Torrey.

<DIV class=cnnStoryElementBox _extended="true"> <DIV class=cnnStoryElementBoxAd _extended="true"> <DIV class=cnnStoryElementBoxAdHead _extended="true">If you suspect you've been misdiagnosed, you have two choices: You can go back to the doctor who made the original diagnosis, or you can seek out a second opinion (or do both).

In next week's Empowered Patient, we'll tell you how in either case you can help your doctor come up with the correct diagnosis.

CNN's Jennifer Pifer contributed to this report.

* * *

This is the one thing that my doctors never dealt with: treatment for depression made me sicker, not better. Instead of re-examining their diagnosis (i.e., accepting the diagnosis that I had told them I received from a virologist 12 years earlier), they blamed me for "not wanting to get better and have to go back to work", and simply kept pushing anti-depressants, over my protests that they'd been proven ineffective and I wanted to try the pills the virologist had told me would help.

Long story short, just like the young lady who sued Harvard, I will never work full-time again because of damage done by doctors who overruled my prior diagnosis, substituted a misdiagnosis, and then refused to reconsider.

Just as she testified, "no one was listening" to me, either. I kept repeating my prior diagnosis, kept repeating my request for pain pills and sleeping pills, kept repeating the symptoms that proved it was not depression, and was repeatedly put off with assurances that if I tried this one more thing that the doctor wanted to try, then I could have what I wanted; but at the next appointment, there was again "one more thing" he wanted to try first.

At the point that I was trying desperately to convince them that I did NOT have depression, CFIDS.org sent out an e-mail that cortisol testing would be off in one direction for CFS but in the other direction for depression. I printed it out, sent it to my doctor with a request for that test, and it was never ordered. Clearly, he didn't want to see the proof that he was wrong and I was right, because this test would have made it very obvious that I did not have depression, no matter how much he wanted to believe that every divorcee is depressed.

Tags: misdiagnosis, CFS, cancer, dialysis, malpractice

Wednesday, September 19, 2007

"I see no ships"

I SEE NO SHIPS: New Labour Health Policy and Myalgic Encephalomyelitis (ME).*

In November 2006, Professor Anthony Komaroff of the Harvard Medical School publicly stated at the USA Government Centers for Disease Control and Prevention (CDC) press conference that: "…there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness [ME/CFS]. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over"[1].

Indeed, and the growing inexorable truth that bona-fide, neurological ME, long recognised by the World Health Organisation (WHO) at ICD-10-G93.3 [2], is a serious physical illness has yet again been augmented by peer-reviewed science (see: www.meresearch.org.uk ). This time through the work of Drs John and Andrew Chia in California: whose findings hit the news headlines on 13 September 2007 [3]. They have clearly demonstrated that specialised, non-standard, patient investigation reveals serious physical pathology: correlating to sufferers’ experience and symptoms. In this case, stomach biopsies uncovered clear localised enteroviral infection that was undetected by standard tests: with the stated implication that such stealthy infection is likely to be present in the brain/CNS, heart and other key organs. Other ‘novel’ yet scientifically rigorous tests have unequivocally demonstrated, for example, that ME patients’ hearts are in varying degrees of failure [4], their brains are starved of blood and oxygen [5], their muscles have biochemical and cellular damage [6] and that, crucially, matters are made worse with increased physical exertion. In short, ME is not just ‘‘fatigue’, it is a multi-system physical disease where increasing bodily activity can cause long-term serious damage or even death [7]. The marriage of ‘‘Chronic Fatigue’ patients to true ICD Myalgic Encephalomyelitis (ME) patients is an unholy one and good science demands a divorce [8].

In spite of all of this, and in the face of widespread protestations, the UK National Institute for Health and Clinical Excellence (NICE) has just recommended psychotherapy (CBT) and graded exercise therapy (GET) as the ‘‘clinically excellent’ treatment of first choice. It has done so on the basis of only seven highly questionable psychiatric RCT papers that are pregnant with scientific flaws and vested interest: supplied in a completely fraudulent ‘review of the scientific evidence’ by the York based Centre for Reviews and Dissemination (CRD). Not only did the ‘York Review’ team fail to even look at most of the international biomedical evidence mentioned by Professor Komaroff; the lead author of the CRD paper has been (rightly) accused of professional misconduct [9]. The findings and recommendations of the NICE, the NHS-Plus and other instruments of state ‘CFS/ME’ policy are neither ‘evidence based’ or ‘clinically excellent’; they are based upon deception and amount to ‘policy based evidence’ masquerading as ‘evidence based policy’. To add insult to injury, the NICE has ruled out specialist investigative tests (such as those mentioned above) that really do reveal what is going on in patients, and NICE have effectively advised doctors to merely assume that CBT/GET is appropriate: in spite of contraindicating scientific evidence and expert opinion. This is the intellectual equivalent of resolutely standing on a beach with one’s back to the sea and boldly exclaiming: I see no ships! Imagine the outcry if Multiple Sclerosis patients were not allowed a diagnostic lumbar puncture and Cancer patients were refused biopsies and simply told to incrementally increase their activity and ignore clinical signs and symptoms? I repeat; this is notscience, it is not ‘evidence-based’ and it is not ‘clinical excellence’. It is political spin and medical malpractice.

AN INCONVENIENT TRUTH:

Such a travesty against both patients and good science has occurred because a powerful lobby group of insurance-industry-linked psychiatrists, their aides and dupes, have managed to capture the minds of ministers, officials, journalists and some clinicians and journal editors. The insurance industry, and indeed the Department of Work & Pensions, stand to lose considerable sums of money if ME patients are categorised as physically ill - as opposed to psychologically so. The psychiatric lobby has employed four main tactics in their campaign: Firstly, they include vague categories of relatively mildly ‘fatigued’ patients in their ‘CFS/ME studies’ whilst excluding patients with the full neurological and multi-system signs and symptoms recognised by international expertise [10]. Secondly, they have laboured to fudge and confuse disease labels and obscure the way MEis singularly categorised as a physical neurological disorder by the WHO [11]. Thirdly, they largely ignore and misrepresent the body of international biomedical evidence. The situation is summed up succinctly by Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected ME/CFS Clinical Case Definition:

"Supporters suggest that ‘ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes’. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient’s symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS" [12]. Fourthly, the psychiatric lobby has been able to capture the minds of busy professionals and policy-makers via a prolonged and well-funded PR campaign that floods the medical literature and press with what is essentially polysyllabic spin in place of genuine science: taking advantage of the fact that even most doctors simply do not have the time or inclination to engage with the complexities involved. It is effectively assisted in this by the ‘charity’ ‘Action for ME’ (AfME), an organisation that portrays itself as independent and representing ME patients when it is neither: AfME receives government funding, promotes ‘CFS/ME’ psychiatrists and their supporters, obscures biomedical expertise and has not held a properly accountable AGM for over ten years. Frankly, AfME is widely viewed by biomedical activists as a ‘Judas charity’ that obtains money from patients by misrepresentation. The proverbial devil is very much in the detail with all this but, thankfully, an erudite overview with resources for further investigation is now available in the document entitled ‘Corporate Collusion’, by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams. It is available at the ME Action UK website: www.meactionuk.org.uk [13]. This must read paper is accessible to both patients and professionals alike and is a serious tool for investigative journalists, doctors and lawyers. An additional, and excellent, commentary on the NICE Guideline by Richard Simpson of the charity Invest in ME is also essential reading [14].

Corporate skewing of public policy to the detriment of society is of course nothing new and Al Gore so eloquently highlights the problem in his seminal 2006 climate-change film. Mr Gore draws parallels with medical prostitutes working for British American Tobacco in the 1970s: whose claims that smoking was harmless contributed to the death of Mr Gore’s own beloved sister. Prior to the 1980s, ME largely escaped such skulduggery and was a widely accepted physical disease in the mould of post-polio syndrome: residing mainly in honest biomedical research backwaters under the scrutiny of Drs Ramsey, Dowsett and Richardson et al [15]. From the 1980s however, ME became a very costly ‘inconvenient truth’ to insurers and governments alike as it began to reach epidemic proportions with millions affected around the world. Sadly, psychiatric fabrication became the unscrupulous escape route for managers of insurers’ profits and fiscal budgets [16].

Unnecessary death, tainted with the hand of scientific and medical malfeasance, is particularly sad and I strongly urge you to visit the Invest in ME website: www.investinme.org . Do take a look at the death certificate comments and photographs of Sophia Mirza. Sophia died of ME-induced kidney failure after being forcibly removed to a mental hospital by psychiatrists who refused to believe her or conduct an adequate medical examination. As the UK Coroner states: "she died as a result of acute renal failure arising from the effects of Chronic Fatigue Syndrome (M.E)" [17]. Sophia was a beautiful young woman who should have had her whole life ahead of her. Her untimely death is an under-reported national scandal and is far from unique [18]. Journalists and professionals in particular should examine and highlight such matters; but any able person who has been told of the abuse that both science and ME patients are being subjected to in the UK surely has a moral duty to investigate and act – particularly those charged with a social or religious duty of care.

FAIT ACCOMPLI, FAVOURITISM & FIG LEAFS:

Whilst the NICE ‘CFS/ME’ Guideline and other anti-science/anti-patient establishment measures are a massive blow, they are in fact a veritable house of cards and a vulnerable target for committed lawyers and journalists with an eye for detail and justice. Professor Richard Baker, Chair of the NICE Guideline Development Group (GDG), claims in the Preface tohis Guideline:

"In developing the Guideline, we kept in mind the overall goal of improving care for people with CFS/ME, with the patient’s preference and views firmly in the driving seat. Rather than aligning ourselves with one or other perspective on CFS/ME, we have sought to provide practical guidance for professionals and patients" [19].

I have to say that this statement is widely viewed as misleading and either self-deluding or somewhat hypocritical on Professor Baker’s part. Many patients/representatives know from bitter experience how flawed and unfair the so-called patient ‘consultation’ process was and view official UK ‘CFS/ME’ policy, of which NICE is only the capstone of a whole rotten pyramid, as a monumental stitch-up. In truth, official CFS/ME policy was largely a fait accompli before NICE took on its ridiculously restricted/biased remit and embarked upon fig leaf pseudo talks with patients. As patient GDG member Tanya Harrison stated, after resigning in protest from this dubious process: "…the guideline has not fully taken into account the patient and biomedical evidence, because if it had, then it would not be recommending the widespread use of CBT and GET." [20].

Indeed, and whilst it may be true that Professor Baker and colleagues did not give corporate-linked psychiatrists absolutely everything they wanted, to claim that patients had more influence, or even the same influence, over the NICE guideline development process in its entirety is patently false. This point needs to be firmly emphasised. As Peter White et al correctly point out in the BMJ: "The guidelines may seem too obvious to be useful, but this view underestimates the…disagreement about how to help patients. This guidance should remove arguments about…what a service should provide"[21]. Quite; what the psychiatric lobby clearly have achieved is a National Health Service mandate to effectively ignore biomedical evidence, withhold specialised science-based patient and laboratory investigations, essentially treat sufferers of multi-system physical disease as mental patients, use ineffective and contra-indicated CBT/GET ‘treatments’ as the primary intervention (for which at least some of these psychiatrists have financial self-interest). Also, NICE claims of patient ‘choice’ regarding such therapies are highly spurious: they need to be seen in the light of poor patient understanding, practitioner bias, the mental health act, the increasingly precarious legal status of ‘CFS/ME’ patients and the future requirements and chicanery of benefits and insurance organisations. For true ME patients, Unum-Provident’s/the DWP’s ‘Pathways to Work’ project will in reality mean worsened health and poverty. Rather than a pathway to work; for real ME patients, it is a descending stairway to hell: See patients’ CBT/GET bad experiences/survey and welfare support concerns at: www.25megroup.org

POST-ENLIGHTENMENT, POST-DEMOCRACY:

Establishment ME policy cannot be viewed in isolation: it is a part of an increasing general trend in which vested interests of power and money corrupt science, academia and public office for their own ends: as authors such as Noam Chomsky, Noreena Hertz, Michael Moore, John Pilger, Naomi Klein and many, many others have highlighted [22]. Whilst corporate influences over public policy grow, citizen influences diminish: to quote Sir Menzies Campbell MP on life under the New Labour Government (BBC Radio 4 Today programme on 3rd July 2007): "the public no longer has any influence on the way decisions are taken and has become alienated from the democratic process."

In the case of ME, such corporate-serving anti-science, anti-truth bias has tainted the Royal Colleges, the Chief Medical Officer’s Working Group, the MRC, the DoH, the DWP, the NHS, the (York) Centre for Reviews and Dissemination, the Cochrane Collaboration, the Science Media Centre (SMC) and more. Scientific establishment integrity and the historic 'enlightenment' it was founded upon are rapidly diminishing in the UK and elsewhere. Inheritors and guardians of the enlightenment have become its subverters. Thankfully however, the genuine, independent science of many individual scientists is not dead - in spite of attempts to starve it of funds [23]. ME patients therefore have been unwittingly placed in the front line of a wider fundamental conflict. Upon close examination one will discover that they have found themselves doing more than just fighting for their own rights and good science, they are in fact part of a struggle to save our post-enlightenment society from a new vested-interest priesthood of power. Just like the ancient regime of our clerical past; modern day flat-earthers increasingly use political black arts in opposition to real science and knowledge to maintain their hold upon power and wealth. Even to the detriment of citizens’ health. A truly ‘enlightened’ society however is something that has to be constantly fought for because, as ever repeating history shows, power always tends to corrupt. Will humanity ever truly learn one wonders? Difficult, is it not, to avoid developing a certain feeling of Weltschmerz?

Make no mistake however; in ME, the psychiatric somatisation-in-place-of-proper-patient-assessment lobby will be exposed as the deceitful, anti-science cul-de-sac that it is: just as was the case with tuberculosis, multiple sclerosis, Parkinson’s, et cetera, et cetera. It is as inevitable as day follows night. The only question is when? And for how long will patient welfare - and lives - be sacrificed to avoid establishment egg-on-face and financial burden? What is clear however is that when citizens pay taxes and ‘insurance’ premiums – national or private – for science-based healthcare and welfare provision, they are entitled to get what they have paid for and not be fobbed-off in their hour of need. If publicly funded ministers, officials and doctors, as well as insurers, eschew good science and replace it with the spin of vested interest they should be called to account. Please help to do that. All the charges made in this article are backed up by documented fact; please verify this for yourself [24]. And pray that you or your children do not get ME. It can afflict anyone and is a terrible, debilitating and life-wrecking disease [25].

K Short. UK Myalgic Encephalomyelitis (ME) Sufferer. September 2007. contact@angliameaction.org.uk [Permission to repost.]

References:

* Note: the famous phrase "I see no ships" is in fact a misquote attributed to Admiral Horatio Nelson who, during the battle of Copenhagen in 1801, theatrically raised his telescope to his blind eye in order to ignore fleet signals and press on to attack his quarry: a very apt parallel for the world of ME politics

(Substantial footnotes in next post)

Tags: CFS, research, proof

I SEE NO SHIPS (Footnotes)

(These substantial footnotes wouldn't fit in the other post)

[1] Professor Anthony Komaroff: Speaking at the USA CDC press conference on 3 November 2006. See: www.cdc.gov/od/oc/media/transcripts/t061103.htm

[2] ME has been in the medical literature since the 1930s and recognised by the WHO since 1969. See: www.who.int/classifications/icd/en/

[3] ‘Chronic Fatigue Syndrome is Associated with Chronic Enterovirus Infection of the Stomach’ John K S Chia & Andrew Y Chia, J Clin Pathol 2007;0:1-6. doi:10.1136/jcp.2007.050054 - downloadable at: http://press.psprings.co.uk/jcp/september/cp50054.pdf And see BBC News report online at: http://news.bbc.co.uk/1/hi/health/6990957.stm

[4] See: Peckerman A, Lamanca JJ, Dahl KA, et al. Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome of disease. Am J Med Sci. 2003; 326:55––60.

[5] Several studies have demonstrated this. See for example: Schwartz et al AJR 1994;162: 943-951 and: www.meresearch.org.uk and: www.nightingale.ca

[6] Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms. Gwen Kennedy, Vance Spence et al. Free Radical Biology and Medicine: 2005:39:584-589. www.meresearch.org.uk And see: Dr Sarah Myhill. ‘CFS is Low Output Heart Failure Secondary to Mitochondrial Failure.’ www.drmyhill.co.uk/article.cfm?id=381

[7] Dr Sarah Myhill. ‘CFS is Low Output Heart Failure Secondary to Mitochondrial Failure.’ www.drmyhill.co.uk/article.cfm?id=381 And see: ‘CFS: The Heart of the Matter’ - Dr Paul Cheney DVD Seminar 2006 at: www.dfwcfids.org/videos/video200609cheney_about.shtml See: ‘Causes of Death Among Patients With Chronic Fatigue Syndrome’. Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding. DePaul University, Chicago, Illinois, USA Health Care for Women International, 27:615––626, 2006. Routledge. Copyright ©© Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: doi: 10.1080/07399330600803766 www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005 ?crawler=true

[8] See: ‘A New and Simple Definition of Myalgic Encephalomyelitis and a New and Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome’. Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at: www.nightingale.ca See: ‘What is ME? What is CFS? Information for Clinicians and Lawyers’. Malcolm Hooper, Eileen Marshall, Margaret Williams. At: www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

[9] See: ‘Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children, Work to support the NICE Guidelines, carried out by Anne-Marie Bagnall, Susanne Hempel, Duncan Chambers, Vickie Orton and Carol Forbes, Centre for Reviews and Dissemination, University of York October 2005' Comment by Professor Malcolm Hooper & Horace Reid, January 2006. At: www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

[10] See: ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (‘Canadian Criteria’ –– Full Version)’. Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande. Journal of Chronic Fatigue Syndrome. Volume 11, Number 1, 2003. At: http://fm-cfs.ca/CFS-Protocol.pdf

[11] See: What is ME? What is CFS? Information for Clinicians and Lawyers. Malcolm Hooper, Eileen Marshall, Margaret Williams. At: www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

[12] See SHS Box on page 10 of (and indeed the whole document): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie I Van de Sande. UK –– NHS Clinician Endorsed / A4 Format - Version: http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf

[13] ‘Corporate Collusion’ Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm

[14] Invest in ME comments on the August 2007 NICE CFS/ME Guidelines, available at: www.investinme.org/Documents/PDFdocuments/IiME%20Official%20Response%20Final %20to%20CG53%20Full%20Guidance.pdf

[15] ‘The Late Effects of ME -Can they be distinguished from the Post-polio syndrome?’ www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html And see: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson. The Haworth Press, 2001. ISBN: 0-7890-1128-X.

[16] See: SKEWED: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by Martin J Walker, Slingshot Publications, ISBN: 0-9519646-4X. And see: ‘The Mental Health Movement: Persecution of Patients? ..Background Briefing for the House of Commons Select Health Committee’. Professor Malcolm Hooper. At: www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

[17] See: Inquest Implications? Eileen Marshall, Margaret Williams, 16th June 2006 at: www.meactionuk.org.uk/Inquest_Implications.htm See: The Inquest of Sophia Mirza. Sue Waddle, Invest in ME at: www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm See: New Scientist: Sophia Mirza …official UK death from chronic fatigue syndrome: at: www.newscientist.com/channel/health/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome-.html

[18] See: Causes of Death Among Patients With Chronic Fatigue Syndrome. Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding. DePaul University, Chicago, Illinois, USA Health Care for Women International, 27:615––626, 2006. Routledge. Copyright ©© Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI: 10.1080/07399330600803766 www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005 ?crawler=true

[19] See: NICE –– ‘Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy)’ diagnosis and management guidelines: at: http://guidance.nice.org.uk/CG53

[20] See BRAME statement on NICE, August 2007 at: www.brame.org/contact2.html

[21] Peter White et al, BMJ 2007:335:411-412. Also see the very telling BMJ ‘Rapid Responses’ to this article.

[22] See: Noam Chomsky. Profit Over People – Neoliberalism and the Global Order. Seven Stories Press, 1999. ISBN: 1-888363-82-7. See: Noreena Hertz. The Silent Takeover – Global Capitalism and the Death of Democracy. Arrow Books. 2002. ISBN: 0-09-941059-1. See: David C Korten. When Corporations Ruled the World. Earthscan Publications Ltd. 1997. ISBN:1-85383-434-3. See: Michael Moore’s new film: Sicko. Information at: www.michaelmoore.com/sicko/index.html See: The award winning film: The Corporation. Information at: www.thecorporation.com/ [23] See: ‘Corporate Collusion’ Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm And see: New Scientist Magazine, 26 February 2005. Editorial: Which Scientists Can We Trust? Industry and Academia have become Entwined, Eroding Trust in Science –– How Can We Restore it? www.newscientist.com/article/mg18524883.100.html

[24] See: ‘Corporate Collusion’ Hooper, Marshall, Williams, 2007. Available at: www.meactionuk.org.uk/Corporate_Collusion_2.htm And generally visit: www.meactionuk.org.uk www.investinme.org www.25megroup.org www.meresearch.org.uk

[25] See: Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. Professor M Hooper. J Clin Pathol 2007; 60:466––471. Doi: 10.1136/jcp.2006.042408. And see: The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003. And for a concise overview and history of ME & CFS see: A New and Simple Definition of Myalgic Encephalomyelitis and a New and Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome. Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at: www.nightingale.ca For an overview of the clinical signs and research findings see: Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen Marshall, Margaret Williams (For Gibson Inquiry): www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc For interesting theoretical and research developments - with potential to unify biomedical findings and open up exciting new possibilities for a cure see: Professor Martin Pall, Washington State University: ‘Explaining Unexplained Illnesses’, Harrington Park Press, 2007. ISBN: 978-0-7890-2389-6.

Tags: CFS, research, footnotes

Tuesday, September 18, 2007

Late Effects of CFS/ME and Post-Polio

during outbreaks of polio, ME patients in the surrounding areas, weren't prone to polio. ~jvr

http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html

THE LATE EFFECTS OF ME Can they be distinguished from the Post-polio syndrome?

Dr. E.G. Dowsett MBChB, Dip Bact. Honorary Consultant Microbiologist Basildon and Thurrock Hospitals NHS Trust. -- Originally a Presentation to the All Party Group of MPs on ME/PPS on 31st January 2001.

INTRODUCTION: Few people would dispute that ME (Myalgic encephalomyelitis), an illness which blights the hopes and aspirations of all sufferers, especially the young, is denied equal treatment in respect of diagnostic facilities, medical coverage and welfare provision. Comparable chronic and unpredictably disabling neurological conditions, for example Multiple Sclerosis, which was formerly ascribed to "hysteria" and similarly neglected, now receive government recognition, facilities within the NHS, and more generous research funding - though the potential cost of effective treatment can still arouse bitter debate.

WHAT IS ME? [1,2,3]

a. ONSET: It is a syndrome (a group of linked symptoms) initiated by one or more of a related group of enteroviruses which circulate annually in the community in summer and autumn in temperate climates, but all the year round in tropical areas.

b. MINOR ILLNESS: The majority of encounters with these viruses are asymptomatic but some subjects, more commonly teenagers and adults, suffer a seemingly trivial minor illness, usually described as a non specific summer 'flu accompanied by gastrointestinal upset, sore throat and occasionally by generalised glandular enlargment.

c. SECONDARY PHASE: The minor illness is self limiting in 90% of adults. However, some 5-10% of all age groups exposed, may progress to a more significant episode with severe headaches and vertigo, a stiff neck and back and generalised muscle pain, signifying that the central nervous system has now become involved with a possible progression to viral meningitis and encephalitis[3]. Clinical recovery at this stage is normally possible, but does not preclude further effects of the illness in later years. It has to he remembered that ME is a life-long disability where relapse is always possible.

d. FINAL STAGE [1,2]: After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.

WHAT ARE THE LATE EFFECTS OF ME? Most doctors with substantial experience of examining these patients would agree that the outlook for any individual is unpredictable. Case records need to be kept up to date for prolonged periods because patients who have remained clinically stable over 40 years or more and have worked normally for most of their lives are still subject to significant late effects. These include: overwhelming fatigue both physical and mental; cognitive disturbances; muscular and joint pain; muscular weakness and wasting; difficulty with breathing; episodes of hypothermia and low blood pressure; problems with swallowing and voice production as well as sudden attacks of breathlessness while sleeping. The similarities of these symptoms to those complained of by sufferers from the Post-polio syndrome, is striking and requires further explanation.

WHICH GROUP OF ME SUFFERERS ARE CHIEFLY AT RISK OF THE LATE EFFECTS? [4] The majority of ME patients contract their illness in the 3rd and 4th decade (50%) with secondary peak at puberty (18%). The incidence at the extremes of age (below 10 years and above 50 years) has, until recently, been low (about 10% in each group). Epidemiological surveys made between 1988 and 1998, in 2 Essex hospital clinics dedicated to ME, indicate that the percentage of patients over 50 years of age attending with new illness has risen from 6% in 1988 to 16% in 1995 and 18% in 1998. Some patients indeed, present with paralysis. Others have a vague past history of illness in childhood. Some years of"weakness" or "growing pains"; recovery, but always poor at sport; possibly a stable work record for 25 years or more, followed by a decline in walking ability; unusual fatigue after simple tasks; problems with climbing stairs, dressing and with short term memory. The current age range of these patients is from 40-92 years, so it is not easy to dismiss their symptoms as due solely to "ageing". Their social and medical problems are especially severe, as they share all the difficulties of access to remedial and support services complained of by other disabled people in the same age group. However, in the UK, there is almost nowhere to refer patients with suspected post-polio symptoms as the medical profession has largely forgotten or never experienced the many manifestations of that disease. Successful immunisation against only 3 polio viruses among some 69 enteroviruses currently in circulation is deemed to have solved all problems!

WHAT IS THE POST-POLIO SYNDROME? [5,6,7] Poliomyelitis is an acute enteroviral infection with a wide range of clinical manifestations and multi-organ involvement (a fact which was frequently overlooked by physicians dealing with large numbers of dangerously paralysed patients, between 1940 and 1950). 95% of people who contract the infection remain symptom free or suffer only a trivial non-specific respiratory or gastrointestinal illness as in ME. Some 5% of those contracting the minor illness develop muscle weakness or paralysis before more serious or fatal complications supervene. The diagnostic distinction between "paralytic" and "non-paralytic polio" was entirely arbitrary in the days of the big epidemics. In fact, the category of "non-paralytic polio" contained many patients with mild or temporary paralysis and with encephalitis, which occurs in patients reaching the later stages of this illness. Modern studies indicate that overt paralysis in these patients depends entirely on the percentage of spinal nerve cells destroyed. For damage to be visible as weakness or paralysis at least 50%-60% of the nerves controlling muscular action must be damaged or destroyed. Thus, patients with less damage who may only have had a minor illness, and some who were asymptomatic can still present many years later with a classic Post-polio syndrome. Recent publication[6,8] of this information (originally derived from studies made in 1955) has resulted in a re-definition of the post-polio syndrome and willcertainly include many patients currently seen in ME clinics.

SUGGESTED NEW CRITERIA FOR THE DIAGNOSIS AND ASSESSMENT OF THE POST-POLIO SYNDROME [7]. a. A history of remote paralytic or non-paralytic polio, or findings on history, physical examination or laboratory and other technical studies compatible with damage to the central nervous system in earlier life. b. A period of recovery. c. A period of stable functioning for 10-50 years. d. New symptoms for which no other explanation can be found. Many patients and research workers point out that the assessment of sufferers will now have to become more holistic, that standard electrical tests of muscle function (EMG) will have to be more widespread (and repeated), and that manual muscle testing must refer to repetitive activity and daily tasks rather than a single examination on the couch[16].

IS IT POSSIBLE THAT MANY PATIENTS DIAGNOSED AS HAVING ME ARE SUFFERERS FROM AN ILLNESS CLINICALLY IDENTICAL TO "NON-PARALYTIC" POLIO? [6,8] Yes, undoubtedly! This is an important question with fundamental implications for further research into the diagnosis, treatment and prevention of both disabilities. Modern research published currently in a dedicated supplement of the American Journal of Physical and Medical Rehabilitation by the Editor and 3 leading research teams[6,8], indicates that part of the current difficulty in obtaining a clear diagnosis of the post-polio syndrome lies in the error of dividing acute poliomyelitis into "paralytic", "non-paralytic", "abortive" and "sub clinical" categories. It has to be recognised that there is a wide range of nerve damage in every patient. The Post-polio syndrome may therefore include: a. Patients whose nervous system damage was not clinically obvious at the time of diagnosis. b. Those who had minimal paralysis for a short period and were misdiagnosed as non-paralytic polio. c. Those patients suffering from infection due to non polio enteroviruses with potential to cause nervous system damage and the "Post polio" syndrome, equal to that of polio viruses e.g. Coxsackie viruses A9, A7; Coxsackie B viruses 1-6; ECHO virus 9; Enteroviruses 70, 71 - all of which have been implicated in outbreaks of ME or epidemics clinically identical to paralytic poliomyelitis. d. Patients with symptoms clinically identical to the Post-polio syndrome whose nerve damage arises from some other cause, for example, local muscle problems due to metabolic dysfunction, the effects of persistent virus infection, immune reaction to fragments of viral genetic material etc. It is essential that patients with clinical symptoms suggestive of Post-polio syndrome should be referred to a Physician to exclude other nervous diseases (eg, Motor Neurone Disease), and especially those which are treatable.

IS IT NECESSARY TO DIFFERENTIATE BETWEEN THE LATE EFFECTS OF ME AND THE POST-POLIO SYNDROME? [8,9,10] Not really, even if it were useful or practicable to do so at present, as the two conditions are clinically identical and similar in respect of neuroanatomical, neuroendocrine, neuropsychological electroencephalographic and other techniques, including brain imaging and molecular biology, as indicated by a remarkable series of research papers published by Bruno and colleagues over the past 20 years.

WHAT IS THE EVIDENCE THAT THE LATE EFFECTS OF ME AND THE POST-POLIO SYNDROME CAN BE CAUSED BY ENTEROVIRUSES OTHER THAN POLIO VIRUSES 1-3? a. [11] In 1948, the year in which polio viruses were first cultured, specimens from 2 children with clinical poliomyelitis, yielded a non-polio enterovirus, (eponymously called Coxsackie after the neighbourhood in which they lived). This finding opened a Pandora's box of some 70 previously undiscovered enteroviruses of which 14 strains were later found to have neurogenic potential equal to that of polio viruses. b. [12] From the late 1940s, studies in the USA indicated that outbreaks of major or minor enteroviral illness (eg. Paralytic or non-paralytic and non specific "summer 'flu") could be caused by varying proportions of virulent and non virulent polio viruses combined with other neurogenic enteroviruses, for example in Akron and Cincinnati [Table 1], Ohio (1947) Delaware and Connecticut (1949). c. [13] In the UK, an outbreak of poliomyelitis affecting an Edinburgh housing estate from August 1961-February 1962 (a period when polio immunisation with the Salk (injectable) vaccine had recently been introduced) provided evidence that a "mosaic" of enteroviruses, including Polio type 3, Coxsackie viruses B2 and B4, Echo viruses 5 and 15 could act in combination to enhance virulence in individual patients, to block the spread of polio virus type 3 and to interfere with vaccine efficiency. Each virus type appeared sequentially until the arrival of Echo virus 5 in November which ended the outbreak by the following February (as indicated by serial sampling of the local school sewer). It has to be remembered that a sudden change in the virulence and spread of enteroviruses in the 20th century has been due to alterations in human hygienic behaviour rather than to viral mutations.

HOW MAY SYMPTOMS OF THE LATE EFFECTS OF ME AND POLIO BE EXPLAINED? [9,10] It has to be accepted that some degree of encephalitis has occurred in all these cases and that the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem (a nerve centre controlling all vital bodily functions which is always damaged). The most troublesome symptoms of both conditions are progressive muscle weakness, fatigue and pain, and the commonest cause of relapse over use of repaired nerve networks and an inappropriate response to physical or mental stress in combination with the increasing effect of normal aging.

FATIGUE: This is almost always central and due to damage affecting the Reticular activating system (which keeps the brain awake and alert as well as maintaining some control over muscular activity). Fatigue is characteristically intermittent, but profound and incapacitating and related even to minor activity. [14]

MUSCLE WEAKNESS AND WASTING: This may have a central cause (as above) or a local origin due to loss of motor units controlling individual muscles (including the breakdown of repair to these over time). Metabolic, immune or ongoing viral injury to muscle fibres, are other possibilities where infection persists.

PAIN: This is a severe symptom which is difficult to treat and is usually due to dysfunction of the thalamus, an important sensory relay station in the brain stem. Failure to produce natural painkillers (e.g. endorphins and encephalins), may be an additional factor.

INAPPROPRIATE REACTION TO PHYSICAL OR MENTAL STRESS: This also arises from injury to the brain stem which normally controls the production of cortisol (a steroid required for stress control) via the hypothalamus, pituitary and adrenal glands . In the absence of an efficient response, even minor stress can cause catastrophic collapse in these patients. NB. Because of the many and varied symptoms arising from encephalitic damage to the brain, all symptoms reported, however bizarre they may seem, must be taken as possible evidence of organic disease.

MANAGEMENT: Despite promising reports from the USA of anti-enteroviral agents[18], and of Dopamine receptor agonists[9] (to correct some deficiencies in neurotransmission) no specific medical treatment is yet available in the UK and the main principles of management rely upon conservation of energy, reduction of stress, and simplification of manual tasks at home or at work. These objectives cannot possibly be achieved without financial and social support, aids to mobility, house conversions and suitable rehabilitation facilities. In the USA it is claimed that (with counselling, if necessary, for those who find such adjustments to life style difficult) 91% of patients will stabilise in view of the fact that, at this stage, the disability is only slowly progressive. Patients have to be cautious about drugs, especially those acting on the central nervous system including psycho-active preparations and alcohol. In general, these patients need less anaesthetic but higher doses of pain killers than usual and more time to convalesce from surgery. There are now many new options for muscle problems including modern orthoses and corrective surgery.

COMMENT.[15] a. There has been little government interest or support for patients suffering from the late effects of ME or from the post-polio syndrome. It is generally expected that survivors of polio will gradually disappear because of successful immunisation of the UK population 40 years ago. However the fact that "Post-polio", by any other name, can arise from currently circulating enteroviruses has not been taken into account. The Chief Medical Officer's Working Party on ME (set up in 1999 and funded privately by the Linbury Trust) has made it clear that its remit is only with management, and that all discussion about the cause, epidemiology and social benefit requirements of these patients is ruled out. It seems that it will be difficult to advise on rational management in the absence of such vital information. b. The potential size and cost of the problem. This is impossible to assess in the UK because no official epidemiological surveys have been made. However, increasing numbers of patient support groups and individual research workers have been making their own calculations. In the case of ME, prevalence appears to range from 300/100,000 to 500/100,000 in occupations at high risk of infection[2], but no information is yet available about the number likely to suffer late effects (except that it may have trebled in the last 10 years)[4]. The number likely to be affected by the post-polio syndrome has been calculated as between 200-270/100,000 currently[7], but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16] c. Some Immediate Steps that Could Be Taken[7,17,18,19,20]. These patients could be referred to NHS rehabilitation clinics and welfare facilities as for any other chronic neurological disease but physiotherapy must include exercise suitable for patients with some damaged muscle fibres which have been overused while others are normal and liable to deconditioning[7]. Separate "ME" and "Post-polio Clinics" are more expensive and often inaccessible. We should be educating doctors and paramedics now about the very common and seriously disabling effects of neglect[7]. Rapid diagnostic tests for enteroviruses, anti-enteroviral drugs and possible vaccines are already in preparation here, or in use (in the USA) to deal with the tremendous burden of circulating enteroviral infections, (for example, leading to febrile respiratory infections, viral meningitis and myocarditis, let alone unnecessary admissions to hospital and inappropriate prescription of antibiotics in children)[17,18]. These methods could well be employed for the benefit of young people in the UK and to prevent the rising tide of ME in schools - the commonest cause of long term absence and subsequent educational deficit![19,20] d. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13] Table 1: http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html

REFERENCES.

1 RICHARDSON J. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Enteroviral - Mediated Organ Pathology. The Haworth Press Inc. New York, London Oxford. ISBN 0-7890-1127-1 (in press).

2 DOWSETT EG, RICHARDSON J. The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK - 1919-1999. Evidence submitted to the All Party Parliamentary Group of MPs on ME 23.11.99.

3 Echo Viruses and Meningitis. Scottish Centre for Infection and Environmental Health, Weekly Report, 7.11.2000.

4 RAMSAY AM, DOWSETT EG. - Then and Now. An epidemiological introduction (in the Clinical and Scientific Basis of Myalgic encephalomyelitis/Chronic Fatigue Syndrome. HYDE BM, GOLDSTEIN J, LEVINE P. Eds): The Nightingale Research Foundation, Ottawa, Ontario, Canada, 1992 Chapter 7 : 81-84.

5 DALAKAS MC. Post-polio Syndrome 12 years later (in the Post-polio Syndrome - advances in the pathogenisis and treatment. DALAKAS MC, BARTFIELD H, KURLAND LT. Eds) Annals of the New York Academy of Sciences: 1995; 753: 11-18. [PubMed Abstract]

6 FALCONER M, BOLLENBACH E. Late Functional Loss in Nonparalytic Polio. American Journal of Physical Medicine and Rehabilitation. 2000; 79(1) 19-23. [PubMed Abstract]

7 Basic information leaflet for health professionals on Post-polio syndrome/late effects of polio. Lincolnshire Post-polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK. October 2000

8 JOHNSON EW: A Clarification of "nonparalytic" polio:3 BRUNO RL : Paralytic vs. "Nonparalytic" Polio. Distinction Without a Difference?: 4-12. [PubMed Abstract] HALSTEAD LS, SILVER JK: Nonparalytic Polio and Postpolio Syndrome: 13-18. [PubMed Abstract] (see opus cit. reference 6)

9 BRUNO RL, SAPOLSKI R, ZIMMERMAN JR, FRICK NM. Pathophysiology of a Central Cause of Post-polio Fatigue. (in the Post-polio syndrome – advances in pathogenesis and treatment. DALAKAS MC, BARTFIELD H, KURLAND LT: eds.) Annals of the New York Academy of Sciences. 1995; 753 : 257-275. [Lincolnshire Library Full Text]

10 BRUNO RL, FRICK NM, CREANGE MA, ZIMMERMAN JR, LEWIS T. Polio Encephalitis and the Brain Generator Model of Post-Viral Fatigue syndromes. Journal of Chronic Fatigue Syndrome. 1996; 2 (2,3): 5-27. [Lincolnshire Library Full Text]

11 DALLDORF G, SICKLES GM, PLAGER H, GIFFORD R. A virus recovered from the faeces of "poliomyelitis" patients. Pathogenic for suckling mice. Journal of Experimental Medicine. 1949; 89: 567-582.

12 MELNICK JL, LEDINKO N, KAPLAN A, KRAFT E. Ohio Strains of a Virus Pathogenic for Infant Mice (Coxsackie Group). Simultaneous occurrence with poliomyelitis virus in patients with "summer grippe". Journal of Experimental Medicine. 1950 : 91: 185-195.

13 SELWYN S, HOWITT LF. A Mosaic of Enteroviruses. Polio, Coxsackie and Echo infection in a group of families. The Lancet. 1962; 2 : 548-551.

14 LANE RJM, BARRETT MC, WOODROW D. Muscle Fibre Characteristics and Lactate Responses to Exercise in CFS. Journal of Neurology Neurosurgery and Psychiatry. 1998; 64: 362-367. [PubMed Abstract]

15 Letter from Parliamentary Under Secretary of State, Department of Health (Yvette Cooper) to Matthew Taylor MP 20.6.2000 re. Post-polio Syndrome in UK.

16 HALLAM H. Polio Survivors need holistic multidisciplinary assessment because the standard physical assessment is not adequate. LincPIN Newsletter June 19, 1999.

17 ROTBART H, MCCRACKEN GH, WHITELY RJ. et al. Clinical significance of enteroviruses in serious summer febrile illnesses of children. Paediatric infectious diseases. 1999; 18 : 869-74. [PubMed Abstract]

18 ROTBART HA, O'CONNELL JF, McKINLAY MA. Treatment of Human Enterovirus Infection, Antiviral Research. 1998; 38 : 1-14. [PubMed Abstract]

19 DOWSETT EG, COLBY J. Long Term Sickness Absence due to ME/CSF in UK Schools - an epidemiological study with medical and educational implications. Journal of Chronic Fatigue Syndrome 1997; 3 (2) : 29-42.

20 RANGEL L, GARALDA ME, LEVIN M, LEVIN M, ROBERTS H. The course of severe chronic fatigue in childhood. Journal of the Royal Society of Medicine. 2000; 93 : 129-134. [PubMed Abstract] The Lincolnshire Post-Polio Network http://www.ott.zynet.co.uk/polio/lincolnshire/network.html

Dr. Dowsett

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non-neurological complications affecting the liver, cardiac and skeletal, muscle, endocrine and lymphoid tissues are also recognized. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over-exertion. – Dr. Elizabeth Dowsett

Dr. Dowsett recommends: "M.E. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!"

Not "mysteriously" at all, but through the involvement in the 1988 renaming process of psychiatrists who saw a gold mine in having the symptoms of this epidemic illness classified as something they and their colleagues could spend a lifetime "treating". If the patient didn’t improve (and viruses don’t improve just from talking about them), they could blame the patient "not wanting to get better" and recommend another year of counseling, and another and another. (Extra benefit, by portraying it as a psychiatric illness, private disability insurance need only pay for two years, not for life, and SSDI can refuse benefits on grounds that the patient is not receiving psychiatric treatment, a major cost savings for both SSDI and insurance companies.) A little sleight-of-hand, and ME becomes CFS, which is subsumed into psychiatric fatigue syndrome, and, voila, there is no connection between CFS (née ME) and ME, because ME no longer exists in the US by executive fiat, and CFS has been re-defined away from the original disease it was coined for.

Speaking for myself, there is no question that my symptoms began with a severe virus ... except in the minds of those doctors who made unequivocal statements to me that women don’t want to work, they want to be housewives. The virus is not mentioned in their notes; they came up with bogus psychiatric explanations not supported by the facts. It was easier than changing their misogynistic minds to accept that those of us raised in feminist households grew up expecting to have a career and never had the slightest intention of being a housewife – as a kid, I played Office, I did not play House. Stereotypes die hard.

As Dr. Dowsett notes, the "commonest causes of relapse" are physical OR mental over-exertion. Although I often work lying down (more blood flow to the brain that way) (see explanation at http://www.dfwcfids.org/medical/cheney/heart04.htm), so there’s very little physical exertion in my job, I can just as easily push myself over the edge with the mental exertion of concentrating on my editing work for too many hours. I know my limits, and I know what happens if I exceed them. A few years ago, I was encouraged to stretch my known limit of working 6-10 hours a week "just a little" to 12-15 hours; it doesn’t sound like much, but it was enough to have me first making mistakes in my work and then have what one of my doctors called "flu-like symptoms" for a couple of weeks. These are objective symptoms that cannot be denied or written off to fantasy – you’re welcome to come over and watch, if you’re one of those who believes CFS is entirely subjective, or that it consists only of "fatigue". And while I now have those symptoms only rarely, because I stay within my limits, I had them every single day when I pushed myself to exceed my limits. (And especially when my daily limit was less exertion than required to deal with the barest minimum of chores – feeding myself and the cats.)

Yes, the difference between 10 hours a week and 12 hours a week does make that much difference in my health, just as the minuscule difference between spending a dollar less or a dollar more than your take-home pay will eventually make the difference between having a few bucks in the bank or filing bankruptcy.

N.B. The US government/CDC/NIH have refused to accept the 1992 ICD-10, which makes it clear that CFS a/k/a ME is neurological and not psychological. It is essentially impossible to get an ME diagnosis in the US.

Tags: CFS, M.E., Dowsett, ICD, neurological, symptoms, diagnosis, research

Monday, September 17, 2007

Neuroetiology of CFS

Neuroaetiology of chronic fatigue syndrome: An overview.

Journal: World J Biol Psychiatry. 2007 May 8;:1-7 [Epub ahead of print]

Authors: Sanders P, Korf J.

Affiliation: University Centre of Psychiatry, University of
Groningen, Groningen, The Netherlands.

NLM Citation: PMID: 17853290

Chronic fatigue syndrome (CFS) is now recognized as a medical
disorder. In contrast to recent related reports, the present review
focuses primarily on aetiological aspects of CFS.

Four major hypotheses are reviewed.

(1) Although CFS is often associated with viral infection, the
presence of viruses has as yet not consistently been detected.

(2) It is not clear whether anomalies of the HPA axis often observed
in CFS, are cause or the consequences of the disorder.

(3) Immune dysfunction as the cause of CFS is thus far the weakest hypothesis.

(4) The psychiatric and psychosocial hypothesis denies the existence
of CFS as a disease entity. Accordingly, the fatigue symptoms are
assumed to be the consequence of other (somatic) diseases.

Other possible causes of CFS are oxidative stress and genetic predisposition.

In CFS cognitive behavioural therapy is most commonly used. This
therapy, however, appears to be ineffective in many patients.

The suggested causes of CFS and the divergent reactions to therapy
may be explained by the lack of recognition of subgroups.
Identification of subtypes may lead to more effective therapeutic
interventions.

Tags: CFS, neurology, therapy

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