Wessely and Harassment

Since I am also harassed -- including in comments to this blog -- for being a CFS advocate, I gladly repost Angela's correspondence.

PERMISSION TO REPOST

Below is a series of correspondence I have recently had with
Professor Peter McGuffin, Dean of Psychiatry at the Institute of 
Psychiatry, King's College, London, and John Williams, Interim Head
of HR , at the  Institute of  Psychiatry, King's College, London.

I have transcribed the correspondence by both, but have the original
documents in my possession.

The contents of this correspondence are self-explanatory.

I am publishing this correspondence for two reasons:

1. I consider that I have been defamed, and seek to protect my good
name and reputation against defamatory attacks of this nature.

2. This situation, sadly, relates to an increasingly unpleasant and
worrying phenomenon. I have observed, over the years, a growing
tendency, by some, to make grossly ad hominem attacks on ME/CFS
advocates and the community at large. These are logically
indefensible, and morally and intellectually unsound: and have had
the effect of preventing reasonable, legitimate voices of criticism
being acknowledged within the discourse of ME/CFS politics. This has
adverse consequences for sufferers, especially when such claims are
accepted, unsubstantiated, at face value, by others such as
politicians.  This is a phenomenon  which I will return to in the
coming months.

Angela Kennedy

-------------------------------------------------------------------

1. Letter from Angela Kennedy to Peter McGuffin:

1st October 2007

Dear Professor McGuffin,

I am writing to you about a serious matter of defamation which
potentially involves a member of your department, Professor Simon
Wessely.

I am an advocate for my daughter,  a young woman seriously ill and
severely disabled by her illness, who was diagnosed with ME/CFS. I
also politically advocate for the community at large. I am also a
known critic of  the `psychiatric paradigm' of ME/CFS, and I
undertake this from an academic perspective (I appreciate the above
term might be contested, but that is not the issue at hand).

I am currently working towards publication on this issue, having
been engaged in academicresearch for some years. I have a social
science background and am an Associate Lecturer with the Open
University (although the work I am undertaking in this field is not
connected to this institution).

I therefore do have a reputation that might be damaged by libellous,
defamatory comments.

In recent weeks, various editors of the Wikipedia online
encyclopaedia have expressed an intention to publish claims that
Professor Wessely has `retired' from `CFS' research because
of  `harassment' by certain people within the ME/CFS patient
community. The basis for these claims is the Gibson Report, an
unofficial, unsourced, un-referenced document, which has been
criticised for key inaccuracies, and inflammatory, inaccurate
language about the patient community and its advocates.

I, with other advocates, have endeavoured to  provide reasons and
evidence as to why the Gibson Report is not a reliable source, and
why claims of `harassment' are, certainly at present,
unsubstantiated and unsafe to the point they should not be published
on Wikipedia. One advocate has attempted to clarify, by contacting
MP Ian Gibson himself, the source of the comment, within the report
itself, that Professor Wessely has retired from "CFS" research, and
the claim that this was "possibly due to extreme harassment" [my
italics] present within the report. Ian Gibson's researcher is
following this up.

This is an extremely important issue. I, like many in the community,
would condemn  harassment of academics (particularly harassment as
defined in criminal law), particularly as I am myself an academic,
and because I have been subjected to criminal harassment before,
which I have reported to the police. However, there is also a
problem around the use of the term `harassment`: ME/CFS sufferers
and their advocates have for many years been subject to inaccurate
ad hominem attacks on their motives for protesting the psychiatric
paradigm. Inaccurate descriptions of legitimate critique
as `personal attack', or `abuse', or terms actually associated with
criminal `harassment' are all too common, to the detriment of a
patient community with valid concerns.

On September 26th, and 27th,  2007, a member of the Wikipedia online
encyclopaedia posted a long attack on myself and others, which
included the comments below, on their `Admin Notice board', which
were grossly misrepresentative of my work, and which made false, ad
hominem attacks on my motives. Certain remarks in particular were
highly libellous and defamatory. These remarks have now been present
on the Wikipedia site for approximately 10 days.

I have already written to the founder of Wikipedia, Jim Wales,
setting out the problem, and if I do not receive an apology and
retraction I will take further action. My concern in writing to you
today, however, involves Professor Wessely himself. The person
posting these comments (someone whom the evidence suggests is named
Guy Chapman, but which I have asked Mr Wales to verify and confirm),
has claimed this:

"These individuals have also harassed Wessely in real life. That we
can't include because it's not directly stated in the sources, but I
have now exchanged emails with Wessely and it is the case. (Guy)
15:36, 27 September 2007 (UTC) "

I have made legitimate, academically informed critique of the work
of Professor Wessely before in various public and political domains,
as I have with regard to other persons active in this field, but I
have certainly never harassed Professor Wessely in any way,
particularly according to the British legal definition
of `harassment'. I have never emailed Professor Wessely, although he
did once send an unsolicited email to me on 24th January 2004. I
have never phoned him, or written to him, or done anything that
should at all be construed as harassment. I have never made
any `personal attack' on him.

I strongly re-iterate, particularly, that critique of a person's
claims in a field of study, or conduct in that field, does not
itself constitute personal attack or harassment. Inaccurate claims
that critiques, from members of the ME/CFS community and their
advocates,  of the `psychiatric paradigm`, or the actions of its
proponents, somehow constitute `personal attack' are a demoralising
phenomenon. This is a key issue, and one on which I have undertaken
further study.

But my specific worry here, is that it appears possible, from the
comments of this person on the Wikipedia Admin Board,  that
Professor Wessely has written an email to this person, claiming that
I have `harassed' Professor Wessely`in real life'. This claim, if
indeed it has even been made, is patently false, and defamatory.

However, I accept the possibility that this claim may never have
even been made, at least not in regard to myself. I therefore
request from you confirmation of whether, or not, an email was sent
to Guy Chapman, or other person, by Professor Wessely, claiming that
I, specifically, have `harassed' him, or that `One Click', a group
with which I was previously involved, have `harassed' him. I also
request access to any communications between Professor Wessely and
this person around this issue.

If, and how, Mr Wales responds to my letter will determine what
further action I may take in regard to Wikipedia's own part in this
issue. My specific concern here is to establish whether, or not,
Professor Wessely has made defamatory remarks against me. The result
of my enquiries with yourself will determine what further action I
may take, and I reserve the right to take further action as
necessary, including possibly legal action, and the publicising of
my investigations.

I would be grateful if you would attend to this issue urgently, and
look forward to your prompt response.

Yours faithfully [etc.]
---------------------------------------------------------

2. Letter from Peter McGuffin to Angela Kennedy:

12 October 2007
Dear Ms Kennedy,

Thank you for your letter dated 1 October 2007 and received by e-
mail in this office on 9 October 2007. The hard copy that you refer
to in your email has not been received by this office.

Harassment is a serious issue and I welcome your acknowledgement of
the distinction between an academic critique and a personal attack.
I regret, however, that I am not able to comment on your conjectures
about Wikipedia.

Yours sincerely [etc.]
----------------------------------------------------------------

3. Letter from Angela Kennedy to Peter McGuffin:

18th October 2007

Dear Professor McGuffin,

Thank you for your letter of 12th October.

I am writing firstly  to let you know that my letter to you (which
you have said was not received) was sent by special delivery.
However, I do appreciate the problem may be related to the recent
postal strikes as much as any potential internal delivery problems
at KCL. If you wish, I can pursue the matter further with the Post
Office.

My second point is regarding your response to my request for
clarification. Contrary to what you have written in your response, I
was not actually making conjectures about Wikipedia and asking for
your comment. In my letter to you I asked specifically whether
Professor Wessely has made any comments about myself
allegedly `harassing' him to a third party in the form of an email.
Would you please confirm to me whether or not Professor Wessely is
prepared to answer this very specific question, and whether the
Department of Psychiatry are prepared to make this answer known to
me?

I would be grateful if you would attend to this issue urgently, and
look forward to your prompt response.

Yours faithfully [etc.]
------------------------------------------------------------------

4. Letter from Peter McGuffin to Angela Kennedy:

19 October 2007

Dear Ms Kennedy,

Thank you for your letter dated 18 October and received by email in
this office on 18 October 2007.

The hard copy of your letter dated 1 October 2007, which was sent by
special delivery, was received in the Institute of Psychiatry's post
room on 16 October 2007 at 9.35 am and picked up by this office
later that morning.

I reiterate that I am not able to comment on anything that may or
may not be said in an online encyclopaedia.

Yours sincerely [etc.]
-----------------------------------------------------------

5. Letter from Angela Kennedy to Peter McGuffin:

22 November 2007

Dear Professor McGuffin,

Thank you for your latest letter of 19th October. I apologise for my
delay in responding.

As you acknowledged in your letter of 12th October, Harassment is a
serious issue. To make false claims of harassment against an
academic is also a very serious issue, as no doubt you are aware.

If Professor Wessely had made claims that I have personally harassed
him, they would be false, and therefore libellous. It should
therefore be really very easy for Professor Wessely to confirm to
you that he has not made such claims of harassment against myself,
and for you to confirm to me the case. The fact that such a
confirmation is not forthcoming causes me great concern.

I amtherefore once more requesting that you confirm, as Professor
Wessely's line manager, that Professor Wessely has not made any
claim that I have personally harassed him, to a person named Guy
Chapman, a known `Wikipedia Administrator', or to anyone else.

If this cannot be confirmed, and there is good reason to believe
that Professor Wessely has either claimed or implied that I
have `personally harassed him', then I shall expect an urgent
apology by letter from your institution.

I reserve the right to pursue action as appropriate, to ensure my
good name and reputation is not continued to be brought into
disrepute. I would be grateful if you would attend to this issue
urgently, and look forward to your prompt response.

Yours faithfully [etc.],
----------------------------------------------------------------

6. Letter from Angela Kennedy to John Williams:

17th January, 2008

Dear Mr Williams,

I am writing to you about a serious matter of defamation which
potentially involves a member of KCL, Professor Simon Wessely. You
have been copied in, by email, to my letters to Professor McGuffin
on this issue, and therefore should be aware of the situation to a
degree.

I am an advocate for my daughter,  a young woman seriously ill and
severely disabled by her illness, who was diagnosed with ME/CFS. I
also politically advocate for the community at large. I am also a
known critic of  the `psychiatric paradigm' of ME/CFS, of which I
contend Professor Wessely is a proponent, and I undertake this
critical engagement from an academic perspective (I appreciate the
above term might be contested, but that is not the issue at hand).

I am currently working towards publication on this issue, having
been engaged in academic research for some years. I have a social
science background and am an Associate Lecturer with the Open
University (although the work I am undertaking in this field is not
connected to this institution).

I therefore do have a reputation that might be damaged by libellous,
defamatory comments.

On September 26th, and 27th,  2007, a member of the Wikipedia online
encyclopaedia posted a long attack on myself and others, which
included the comments below, on their `Admin Notice board', which
were grossly misrepresentative of my work, and which made false, ad
hominem attacks on my motives. Certain remarks in particular were
highly libellous and defamatory. The remarks stayed on the Wikipedia
site for approximately 2 weeks before they were removed by Jim
Wales,  the founder of Wikipedia, after my continued insistence over
that period.

The person posting these comments (someone whom the evidence
suggests is named Guy Chapman, but which I have asked Mr Wales to
verify and confirm), has claimed this:

"These individuals have also harassed Wessely in real life. That we
can't include because it's not directly stated in the sources, but I
have now exchanged emails with Wessely and it is the case. (Guy)
15:36, 27 September 2007 (UTC) "

I have made legitimate, academically informed critique of the work
of Professor Wessely before in various public and political domains,
as I have with regard to other persons active in this field, but I
have certainly never harassed Professor Wessely in any way,
particularly according to the British legal definition
of `harassment'. I have never emailed Professor Wessely, although he
did once send an unsolicited email to me on 24th January 2004. I
have never phoned him, or written to him, or done anything that
should at all be construed as harassment. I have never made
any `personal attack' on him.

I strongly re-iterate, particularly, that critique of a person's
claims in a field of study, or conduct in that field, does not
itself constitute personal attack or harassment. Inaccurate claims
that critiques, from members of the ME/CFS community and their
advocates,  of the `psychiatric paradigm`, or the actions of its
proponents, somehow constitute `personal attack' are a demoralising
phenomenon. This is a key issue, and one on which I have undertaken
further study.

But my specific concern, is that it appears possible, from the
comments of this person on the Wikipedia Admin Board,  that
Professor Wessely has written an email to this person, claiming that
I have `harassed' Professor Wessely `in real life'. This claim, if
indeed it has even been made, would be  patently false, and
defamatory.

My first letter to Professor McGuffin set out these concerns, and
also that I accepted the possibility that this claim may never have
even been made, at least not in regard to myself, by Professor
Wessely. I therefore requested from Professor McGuffin confirmation
of whether, or not, an email was sent to Guy Chapman, or other
person, by Professor Wessely, claiming that I, specifically,
have `harassed' him, or that `One Click', a group with which I was
previously involved, have `harassed' him. I also requested access to
any communications between Professor Wessely and this person around
this issue.

Professor McGuffin has declined to `comment ` on the issue, despite
the fact that I have written  two more letters to him (copies of
which I have emailed to you) to clarify my concerns and my requests.

As you will no doubt be aware, harassment is a serious issue. To
make false claims of harassment against an academic is also a very
serious issue, of which no doubt you are also aware.

If Professor Wessely had made claims that I have personally harassed
him, they would be false, and therefore libellous. It should
therefore be really very easy for Professor Wessely to confirm  that
he has not made such claims of harassment against myself, and for
this to be confirmed to me. The fact that such a confirmation is not
forthcoming causes me great concern.

In light of the lack of co-operation from Professor McGuffin, I am
therefore requesting that you confirm, as Human Resources Manager
for KCL, that Professor Wessely has not made any claim that I have
personally harassed him, to a person named Guy Chapman, a
known `Wikipedia Administrator', or to anyone else.

If this cannot be confirmed, and there is good reason to believe
that Professor Wessely has either claimed or implied that I
have `personally harassed him', then I shall expect an urgent
apology by letter from your institution.

I reserve the right to pursue action as appropriate, to ensure my
good name and reputation is not continued to be brought into
disrepute. I would be grateful if you would investigate this issue
urgently, and look forward to your prompt response.

Yours sincerely [etc.]
--------------------------------------------------------------

7. Letter from John Williams to Angela Kennedy:

24th January 2008

Dear Ms Kennedy,

Thank you for your letter dated 17th January 2008.

I haveconsidered the contents carefully but I do believe that they
repeat the points that you have made in earlier letters to the Dean
of the School, Peter McGuffin.

Peter wrote to you on 12th and the 19th October  and I am afraid
that I can add nothing to his response.

Yours sincerely [etc.]
-------------------------------------------------------
CORRESPONDENCE ENDS
---------------------------------------------------------------

Tags: CFS, CFS/ME, ME/CFS, advocate, harassment, Wessely, Kennedy

March 10 event -- SACRAMENTO

First "Fibromyalgia Legislation Day" set for March 10, 2008 at Sacramento

National Fibromyalgia Association to Call on Formation of Taskforce to Shed Light on Impact of Healthcare Crisis Impacting Fibromyalgia Community

ANAHEIM, Calif--- People with fibromyalgia are not only under- or un-insured because they are too sick to work or have been denied healthcare coverage based on having fibromyalgia-they also struggle daily for recognition of an illness that many in the medical community and society say is "not real."

To shed light on the impact of the healthcare and social crisis on the fibromyalgia community, the National Fibromyalgia Association will be holding the first-ever Fibromyalgia Legislation Day on March 10, 2008 in Sacramento, including a press conference on the steps of the Capitol Building.

The NFA will be asking legislators to support legislation that would convene a taskforce on fibromyalgia. Over 100 fibromyalgia patients and members of the California Legislative Women's Caucus will also take the NFA "Pledge to Care," which advocates for improved treatments, expanded research, and increased awareness and acceptance of fibromyalgia. "Never has the need been more urgent for action to ensure that no one with fibromyalgia is suffering in silence or being discriminated against," said Lynne Matallana, president and founder of the National Fibromyalgia Association. "We are asking our supporters and advocates throughout California to join our efforts to bring attention to the needs of this deserving community of women, men and children."

To RSVP for the March 10th event, please fill out the online form at National Fibromyalgia Association Legislation Day

http://www.fmaware.org/site/News2?page=NewsArticle&id=6933&JServSessionIdr004=rhtyfg42r1.app8a  

For more information, please contact April Quinn, the NFA's Sr. Director Government and Community Relations, by email: aquinn@fmaware.org or by phone: 714/921-0150.

Origin of Fatigue

This came up in a pubmed alert for Chronic Fatigue Syndrome.  Just thought it was interesting as the emphasis on more physical reasons for the symptom of fatigue specifically (and sleep disturbance) is different than what I tend to see in the CFS literature.

Tom

[I agree with Tom.  This is another situation where a symptom in CFS is written off to psychological reasons, but the same symptom in another disease is considered to have physical origins.]

  1: Neurorehabil Neural Repair. 2008 Jan-Feb;22(1):91-100. Epub 2007 Apr 4.
  Links

  Origin of fatigue in multiple sclerosis: review of the literature.

  Kos D, Kerckhofs E, Nagels G, D'hooghe MB, Ilsbroukx S.

  Vrije Universiteit Brussel, Department of Rehabilitation Research, Brussels,
  Belgium. Daphne.Kos@vub.ac.be 

Fatigue is one of the most common and most disabling symptoms of multiple sclerosis (MS). Although numerous studies have tried to reveal it, no definite pathogenesis factor behind this fatigue has been identified. Fatigue may be directly related to the disease mechanisms (primary fatigue) or may be secondary to non-disease-specific factors. Primary fatigue may be the result of inflammation, demyelination, or axonal loss. A suggested functional cortical reorganization may result in a higher energy demand in certain brain areas, culminating in an increase of fatigue perception. Higher levels of some immune markers were found in patients with MS-related fatigue, whereas other studies rejected this hypothesis. There may be a disturbance in the neuroendocrine system related to fatigue, but it is not clear whether this is either the result of the interaction with immune activation or the trigger of this process. Fatigue may be secondary to sleep problems, which are frequently present in MS and in their turn result from urinary problems, spasms, pain, or anxiety. Pharmacologic treatment of MS (symptoms) may also provoke fatigue. The evidence for reduced activity as a cause of secondary fatigue in MS is inconsistent. Psychological functioning  may at least play a role in the persistence of fatigue. Research did not reach consensus about the association of fatigue with clinical or demographic variables, such as age, gender, disability, type of MS, education level, and disease duration. In conclusion, it is more likely to explain fatigue from a multifactor perspective than to ascribe it to one mechanism. The current evidence on the pathogenesis of primary and secondary fatigue in MS is limited by inconsistency in defining specific aspects of the concept fatigue, by the lack of appropriate assessment tools, and by the use of heterogeneous samples. Future research should overcome these  limitations and also include longitudinal designs.

  PMID: 17409388 [PubMed - indexed for MEDLINE]

Tags: fatigue, CFS, MS, CFS/ME, ME/CFS, origin, neuroendocrine, sleep disturbance

Tips for Online Medical Research

Tips for savvy medical Web surfing - CNN.com http://www.cnn.com/2008/HEALTH/02/21/ep.web.sites/index.html

Tips for savvy medical Web surfing

* Story Highlights

* It's safe to trust info from government Web sites, colleges and universities

* The same is true for sites of large medical and research institutions

* Use search engines that screen out unreliable information

* Look at review articles in medical journals

By Elizabeth Cohen              CNN Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.

ATLANTA, Georgia (CNN) -- When Mary Ryan's 4-year-old nephew, Nick, landed in the hospital with a serious infection, her brother called her in a panic. Ryan isn't a doctor. She's not a nurse. She's a librarian. Finding accurate, reliable medical information on the Web can be a daunting task. Nick had cat scratch fever, and for weeks it was impervious to antibiotics. Desperate, the doctor in Nick's small town wanted to use a more powerful antibiotic that might save him -- but also might make Nick deaf. Ryan's brother hoped she could find something -- anything -- that would save his son without disabling him. Ryan asked one of her colleagues, a research specialist at the Texas Medical Center Library in Houston, to search the medical literature. She came up with an article about an antibiotic that worked against cat scratch fever but wasn't toxic.

"We sent the doctor the whole article, and when he read it, he said, 'This is great. I hadn't thought of that,' " said Ryan, the president-elect of the Medical Library Association. Nick took the antibiotic and recovered without complications.

So if you're trying to find medical information for yourself or someone you love, and you're not lucky enough to have access to a professional research librarian, what do you do?

"The Empowered Patient" assumes you already know the basics of good Internet searching: .gov and .edu sites are to be trusted, as are sites for major health centers (think http://www.mayoclinic.com/  and health organizations (such as the American Cancer Society's cancer.org). "But there's so much more you can do. You can take this to a whole new level," says Jan Guthrie, director of The Health Resource, a for-pay medical research service.

So for the Internet searcher hungry for more, here are some tips for being a sophisticated surfer:

1. Use search engines that screen out the garbage for you

There's a lot of junk on the Internet. "It's the wild, wild West out there," says Alan Spielman, CEO of URAC, a company that certifies health Web sites. "You really have to be alert as you go through these sites." To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. http://dirline.nlm.nih.gov/  run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.

2. Find smart bloggers with your disease

Some bloggers do an excellent job of linking to resources specific to your disease. That goes for advocacy groups, too.

3. Invest 30 minutes in the pubmed.gov tutorial

http://www.ncbi.nlm.nih.gov/sites/entrez/  searches the medical literature, but it isn't completely intuitive. It's worth the time to learn how to use it by doing the tutorial.

Nervous you won't understand the technical jargon in medical articles? Don't be, says Guthrie. She advises reading the very beginning of a study and the very end. "The conclusion will tell you whether the treatment they studied was effective, moderately effective, or not at all effective."

In addition, the Medical Library Association, has brochures called Deciphering Medspeak (http://www.mlanet.org/resources/medspeak/ ) to help translate some of the more common medical jargon.

Tara Parker-Pope (http://well.blogs.nytimes.com/ ) , a health columnist for the New York Times, found it useful to specifically search for review articles on pubmed when she was looking for treatments for her mother's esophageal cancer. Review articles give an overview of the latest research on a particular subject. "Review articles are an excellent way to get a lay of the land and to get the big picture on a topic," Parker-Pope says. To find review articles on pubmed, go to the "limits" tab and then under "type of article", check "review."

4. Click on information about annual meetings

For example, let's say you just got a breast cancer diagnosis. You could go to http://www.asco.org/ , the site for the American Society of Clinical Oncology, and look at information on new breast cancer treatments discussed at last year's meeting.

This is the way to get cutting-edge information, Guthrie says. "Information on new treatments is presented at conferences six to 12 months before it's published in a medical journal."

Guthrie says she managed to find out about a new treatment for tendonitis this way. "It wasn't even in the medical journals yet. We found one doctor in New York who was doing it. If I had tendonitis, it might've been worth traveling to him," she says.

5. When in doubt about a Web site, click on "about us"

Sometimes it's clear who runs a Web site. Often it's not. Clicking on "about us" should explain it. Knowing who's behind the information you're reading (especially if they're trying to sell you something) helps you evaluate whether the information is biased. If you can't figure out who runs the site, don't use it.

And here perhaps are two of the most valuable pieces of advice: Use Internet resources in combination. "An advocacy group or a review article by itself is pretty useless," Parker-Pope says. "No one of these works by itself." The second piece of advice: Don't expect the Internet to cure your disease. "I wanted to find the needle in the haystack to cure my mother," Parker-Pope says. "But information doesn't cure cancer. It just leads you to the best doctor and the best options."

Parker-Pope never found the needle in the haystack. Her mother, Karen Parker, died nine months after her diagnosis. But because of what they found out on the Internet, Parker-Pope and her family had confidence she received the best possible care. "And feeling confident in your care is no small thing," she says.

* * *

As a friend's rheumatologist told her, "I have to keep up on 400 diseases, you only need to keep up on one."  Therefore, he assumed that she would have information that he had not read yet.  The best doctors are those who are open to reading and discussing what the patient researches; there are some who will dismiss anything you find on the internet -- even the online version of a reputable medical journal! -- as not worth reading; those are the doctors who are not worth seeing.

In addition to "savvy bloggers" (and I would recommend, if there's contact information, to contact the blogger directly to ask your specific question; there are topics I'm working on that haven't been posted yet, and topics I haven't even started working on, where I have information that could help answer an urgent question), I would also recommend going to Yahoogroups.com and searching for online support groups. 

A friend recently got a diagnosis and we found over 600 Yahoogroups for her condition.  She's slowly working her way through the descriptions to see which fits her needs best -- some are for people in a specific geographic area, others are primarily for men, or parents of young patients, or caregivers of bedridden patients.  You'll find large groups where the number of posts each day can be overwhelming if you're almost bedridden, and small intimate groups where everyone knows everyone.  There may be a group that specializes in politics or advocacy, or a group that specializes in disseminating research (for CFS/fibro, go to www.co-cure.org and sign up for the mailing list, or just search the archives).  Only you know what you need: information, companionship, a shoulder to cry on, and whether you prefer 2 posts or 200 posts a day.

Tags: online, medical, research, treatment, diagnosis, medical care, information, CFS, medical journal, journal article, blog

Book Recommendation

I have not read it myself, but trust LK.

http://www.amazon.com/Strong-Broken-Places-Voices-Illness/dp/0060763116/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1203428841&sr=8-1

"Strong at the Broken Places"

            by Richard M. Cohen



I can't say that this book made me feel better.

It actually brought me to tears multiple times.

But it also brought to the forefront that many, many

people are chronically ill for many, many reasons.

And as a result, each of us feels like we are somewhat less of a person.

And we are all alone. And we will all ultimately die.



But it also shows incredible individual courage in

the face of adversity and public ignorance,

on keeping hope alive, and

on finding strength and peace under the most difficult circumstances.



"We are strong at the broken places, stronger than we think."



Read it for inspiration.

LKWoodruff

* * *

Even if you start out not feeling bad about feeling bad, other people will MAKE you feel like less of a person for being disabled.  Friends will take umbrage if you have to cancel plans because you don't feel well.  Spouses will make sure you know they feel put-upon because your illness makes them carry more of the load.  And doctors will bully you to prove that you're not just lazy, even when continuing to work makes you sicker.  In some cases, you'll run into doctors who will blame you for your illness and blame you when their magic pills don't work.

You'll get "should"s loaded on you, and when you can't keep up with what other people think you should be able to do, they'll make you feel like a failure.

Resign yourself to the fact that people will see what they expect to see.  If they think you're healthy, they will expect you to keep up the pace, and make you feel guilty when you can't.  But one of my biggest cheerleaders nursed a dying husband.  Where other people think I should be doing more, she knows that some days getting up and dressed is all that can be asked of a sick person, and she cheers along with me when I report that I didn't get the laundry done, but I did manage to do half an hour of stitching -- other people would only see that I didn't do the laundry and give me grief over "accomplishing nothing".

I have dealt with people who are experienced with depression who cannot understand that the ability to lie on the couch and knit does not equate to the physical ability to get up and clean house.  Because their problem is getting motivated to get off the couch, they automatically assume that I'm knitting because I don't have the motivation to get up.  At some point, you realize that it's a waste of effort to explain that you KNOW the house needs cleaning, you WANT to do the cleaning, but your autonomic system dysfunction causes you to pass out whenever you stand up, and therefore, you can only do those things that can be done lying down.  They are seeing your problem through the lens of what they're used to seeing in themselves, and can't get their minds around it that you have an entirely different reason for lying on the couch all day, which has nothing to do with needing a kick in the butt to get going.

Richard Cohen took a group of patients with different health conditions to talk to medical school students.  The theory is that meeting these patients in a situation where the doctor knows they're not asking for drugs will help them to understand what life is really like for the chronically ill.  If someone tells you they're in extreme pain all the time in a situation where you can prescribe pills, you may think they're just looking for party pills and doubt their reports; but if someone tells you that when they know that they're not going to get a prescription, you'll listen differently because you know you're not being manipulated to feed an addiction.

I think this is something that CFS/fibro support groups need to do, if at all possible.  Take patients to talk to doctors and medical school students in a LEARNING situation, where the doctors will not be suspicious that they're being worked for pills, because they know you have no expectation of getting a prescription.  Plus, they won't be within the 7-minute time constraint of a typical appointment, and will have more time to ask questions.  Tell them that a day when you have pain level 6 is actually a GOOD day, because you're usually at 8 or 10; maybe when they're treating patients later in their career, they'll remember hearing that excruciatingpain is not uncommon and be more sympathetic to the reports of pain, as opposed to some of my doctors who couldn't grasp that I was not just referring to a dull achiness, I was not exaggerating a 2 to a 10 because I wanted pills to party with.  All I wanted was enough pain relief to be able to sleep, but no one had ever educated them that CFS/fibro pain is not the same as when "depression hurts" and therefore cannot be fixed with an anti-depressant.

Appropriateness of ME name

The basis for the name, Myalgic Encephalomyelitis, is documented and
clear.  No need to wait with the "-opathy" tagged on nor for the delay in moving
the US to an acceptance of the WHO destination & ICD code in G 93.3.


1.  Eileen Marshall and Margaret Williams excellent article at
M. E. Action UK entitled: "Note on the term "Myalgic
Encephalomyelitis" 16th October 2004.  This
excellent summary, which includes a number of scientific references,
begins like this:  "Despite the relentless financial, psychosocial and
political engineering that seems to underpin the current determination
to remove the term "myalgic encephalomyelitis" (ME) from the medical
lexicon (where, based on accurate published evidence of the nature of
the disorder, it has resided for the last half century), the present
proponents of its demise have failed to produce any evidence-base
to support their clamour for its removal and its replacement by the
less specific term "myalgic encephalopathy".

Such intentional dilution of terminology is puzzling, since it is
clearly not the case (as they proclaim in support of their favoured
term) that there is no published evidence of inflammation of the
central nervous system (CNS) in ME / ICD-CFS  --- see for
example "Prevalence in the Cerebrospinal Fluid of the Following
Infectious Agents in a Cohort of 12 CFS Subjects:  Human
Herpes Virus-6 and 8, Chlamydia Species, Myco[plasma
Species, EBV, CMV and Coxsackievirus"   Susan Levine MD.
JCFS 2001:9 (1-2):41-51"

Complete article here:

http://www.meactionuk.org.uk/Note_on_the_term_ME.htm

2. The information cited by Dr. Malcolm Hooper in this article

at the website below the article.

"The Terminology of ME & CFS By Professor Malcolm Hooper"

http://www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm

3.   Autopsy results revealing inflammation of the spinal cord and brain
tissue:

Dr. Hyde relates that it was obvious to Dr. Melvin Ramsay in UK & Dr.
John Richardson in Australia that they were dealing with the consequences
of an epidemic and endemic infectious neurological.

As M.E. expert Dr Byron Hyde MD writes:

"The reason why these physicians were so sure that they were dealing with
an inflammatory illness of the brain is that they examined patients in both
epidemic and endemic situations with this curious diffuse brain injury. In
the epidemic situation with patients falling acutely ill and in some cases
dying, autopsies were performed and the diffuse inflammatory brain
changes are on record" (2006, [Online]).


4.  Inflammatory activation shown in immune profiles such as TH1/TH2
Cytokine Production (Immunosciences)---Interferon Gamma Production
(TH1) over-activation indicates inflammatory activation).

Also, IL-10 (TH2) overactivation indicates fighting inflammation.

Some patients appear to have an over activation
of the anti-inflammatory (Th2) branch and an under activation of the
pro-inflammatory (Th1) branch of the immune system. This could
cause increased rates of allergy and sensitivity on the one hand and
difficulty fighting off pathogens on the other.

Further explanation from Dr. Cheney:
http://www.anapsid.org/cnd/diagnosis/cheneyis.html

***New development:
A new test to show chronic low-grade inflammation is now
available as a recent post by Margaret Williams reports:
http://www.meactionuk.org.uk/Essential_investigations_for_people_with_ME.htm
Here she noted information from a conference reported by Fred
Springfield about a new test that could indicate this to further the
evidence for the last part of the name, -itis, in Myalgic Encephalomyelitis.
Here is a small portion from the post:

"Identification and treatment of symptoms associated with inflammation in
medically ill patients"; Robert Dantzer et al; Psychoneuroendocrinology
2008:33:18-29).  The Review was the result of a meeting on 28th and 29th May
2007 in Bordeaux, France, on inflammation, psychiatry, neurosciences and
psychoneuroimmunology, attended by experts from the US, France, the UK and
Israel.
    As noted by Fred Springfield, whilst not relating specifically to
ME/CFS, the Review may nevertheless be of interest to the ME/CFS community, whose
members may be aware that there is evidence of low-grade (but still
important) inflammation in ME/CFS -- see, for example, "Low grade
inflammation and arterial wave reflection in patients with CFS"; VA Spence
et al, Clin Sci 2007, Epub ahead of print: doi:10.1042/CS20070274, which
contains 54 references and demonstrates that, despite the recent reporting
that markers of post-infective fatigue syndromes are not sustained into the
chronic phase of the illness and play no role in persisting symptoms, hsCRP
levels in (ME)CFS are indeed indicative of chronic, low-grade, sub-clinical
inflammation. (Within the last ten years, researchers have developed a high
sensitivity immunoassay known as hsCRP, which is a much better assay and a
more sensitive marker than CRP, as it can measure levels below 10mg/L.
Whilst some clinicians may still regard low levels as unimportant,
nevertheless at these levels, measurement of conditions indicative of
chronic, low-grade inflammation are now possible)."


Historical note:

A physician from California, ERICH D. RYLL, M.D.,
Assistant Clinical Professor of Medicine, Division of infectious &
Immunologic Diseases, Department of International Medicine, University of California Davis, California, who found this in his investigation of the 1975
outbreak as well as subsequent patients:

"In all of you I find evidence of inflammation of deep veins."

Dr. Ryll  explains: "In the spring and summer of 1975, there was a major,
severe epidemic of a communical, apparent viral disease at the Mercy San
Juan Hospital in Carmicheal, a suburb of Sacramento, California. It occurred
in February, and the bulk of the disease happened between July and November
of 1975. Cases continued to occur, although few, until 1978."

His name for the disease to particularize it & his description:

"Infectious venulitis (IVN) is a disease caused by an as yet unidentified
virus.
This disease begins by an influenza-like onset with headaches, sore throat,
fever, dizziness, runny nose, congested head, nausea, vomiting, muscle
aching, extremity pain, and other features. Unlike ordinary flu, however,
this initial phase of IVN can last as long as a year and longer without let
up.
During this initial flu state, that I call a flu-storm because it lasts so
long in many patients, sufferers are very drowsy at times - almost in a
lightcoma. The extremity discomfort is often described as a burning, searing
sensation.
Joint pains can be severe in some cases, patients have frequent bruises
for unexplained reasons and swollen, painful veins.

After the initial flu state leaves, the patients are still
not well. They have a constant plateau of illness punctuated by unpredictable relapses."

http://www.med-help.net/ME-CFIDS.html

Steven Du Pre
Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org

How CFS starts

Most "true CFS" patients describe it exactly this way...

http://www.sacbee.com/101/story/718704.html

After odd illness that baffled doctors, she's battling back By Dorsey Griffith - dgriffith@sacbee.com
Published 12:00 am PST Sunday, February 17, 2008

During the scariest times last fall, Susan Applegate would reach for a children's book.

She didn't know back then whether Amy, her 22-year-old daughter, would ever wake up, or whether she'd emerge from a coma as the same intelligent woman her mother knew.

Each glossy volume had been given to Amy as a Christmas gift many years before. So Susan Applegate hoped that reading aloud the inspirational books about enduring love and overcoming obstacles would touch some part of Amy's psyche.

Maybe it would help lift her out of a coma and away from a mysterious illness that was leading doctors on an arduous hunt for a cause and a cure. What they found, one doctor said, was something "you might see once in your career."

Amy's ordeal began Nov. 14 with what seemed a run-of-the-mill virus and fever. She called in sick to her job as a classroom aide for severely disabled children, planning instead to sleep through the day in the Carmichael home she shared with her father.

But when her mom stopped by to check on her at 10 a.m., Amy was on the floor next to her bed.

"She couldn't move," Susan Applegate said. "I got her halfway back up on the bed and called 911."

As paramedics loaded her onto a gurney, they tried to gauge her level of consciousness.

"I was scared to death," Applegate said. "I knew something was seriously wrong, especially when the medic asked, 'Do you know what year it is?' And she mumbled, '1996.' "

At the Mercy San Juan Medical Center emergency room, Dr. Dale Curtis knew Amy was gravely ill, "a very sick young lady," he said.

He ordered X-rays, blood and urine tests. He put her on intravenous fluids and called Dr. Jennifer Dean, a "hospitalist" who would coordinate her care there.

Dean knew this: Amy was a young, healthy woman. No history of drug abuse. No known medical or psychiatric problems. Now, she couldn't walk or talk.

"She was talking through her eyes, though," Dean recalled. "It was like she was trying to tell me she knew what was going on, but she was locked in."

Amy's jaw was immobile, her legs stiff. Her big toe turned up when Dean stroked the bottom of her foot. Every indication suggested a neurological problem.

Dean ordered a spinal tap and a brain MRI, and contacted neurologist Peter Skaff.

"It sounded like she had encephalitis," Skaff said later.

Beyond other symptoms pointing to brain inflammation, Skaff noted what appeared to be a type of seizure activity. Amy would stare off into space and nervously fiddle with her bedsheets. A test of her brain activity confirmed the seizures.

Meanwhile, a spinal tap turned up an elevated white blood cell count, indicating an infection, again suggestive of encephalitis.

But the MRI of her brain was puzzling. It showed an unusual pattern in her corpus callosum, the part of the brain that connects left and right hemispheres.

Hers was a pattern more suggestive of multiple sclerosis. It's a central nervous system disease in which a loss of myelin, the protective coating around the nerve fibers, disrupts the body's electrical system and causes physical and cognitive problems.

"But MS is not something that comes on with the overwhelming, all-embracing attack like this," said Dr. Peter Murphy, director of the hospital's intensive care unit, where Amy had been transferred.

By this time, Amy had been put on intravenous antibiotics and antiviral drugs, to no avail.

Within 24 hours of her arrival, she had slipped into a coma and was placed on a mechanical ventilator.

At Amy's bedside, Susan Applegate said, reading her daughter's childhood stories kept her from fearing the worst. For days she read them over and over again: "The Rainbabies," "Princess Furball," "The Steadfast Tin Soldier," and Amy's favorite, "A Wish for Wings That Work," about a penguin yearning to fly, then learning to appreciate his own special attributes.

While Susan Applegate stood vigil, doctors grew increasingly concerned.

Blood tests had ruled out West Nile, herpes and other viruses that can cause encephalitis. A followup spinal fluid analysis found the white cell count had gone back up. A followup MRI showed the brain pattern abnormality had worsened.

By this point, doctors suspected Amy could be suffering not from an infection, but from an immune system malfunction.

They tried steroid drugs, known to block production of chemicals that trigger inflammation. When that didn't work, they treated her with intravenous immunoglobulin, a costly blood product sometimes used to combat serious autoimmune reactions. She remained the same.

Finally, they used a method called plasma exchange, removing her blood – and with it the circulating antibodies thought to be responsible for the immune system's malfunctioning – then returning it to her body.

"After three or four treatments, we started to see some responsiveness," Skaff said.

"I noticed her fluttering her eyes, or she would move her toes," said Susan Applegate. "Bit by bit, she could move her arm up, or turn her head."

Eventually, when friends would visit, Amy would brighten with a broad smile.

Three weeks passed and finally, the diagnosis was clinched: acute disseminated encephalomyelitis, in which Amy's immune system attacked her brain, stripping it of myelin.

The disease was most likely triggered by a mild virus. It affects one in about 250,000 people, typically children and adolescents, and can be deadly or cause permanent disability.

"It's the kind of thing you might see once in your career," Skaff said.

Amy was moved to the intensive care unit at Kindred Hospital in Folsom, a rehabilitation facility for complex patients who need long-term care.

Bernardo Gutierrez and other nurses established a rapport with Amy, still mostly immobilized and dependent on the ventilator. Amy would scowl or frown when she was angry or sad. She mouthed words for her various needs and learned to signal "yes" and "no" by lifting her pinkie finger once or twice.

"She was totally dependent on us," said Gutierrez, who spent hours talking with her during her stay.

At Kindred, Amy started talking again – even with tracheostomy tube still in her throat – and took her first shaky steps. It was a slow, agonizing process; she had lost 30 pounds and every ounce of strength.

Mostly, Amy remembers being bored.

"I missed my friends and my family," she said. "I wanted to get back to my old life."

Since leaving Kindred at the end of December, Amy has made remarkable progress. Her tracheostomy tube was removed in January. This month she started a rehabilitation program.

In speech therapy a specialist challenges her with games to sharpen memory and enhance problem-solving skills, perhaps the most vexing of the deficits Amy experienced as a result of her illness.

Amy is eager to get back to the children she cared for before she became ill.

"I think I will appreciate everything more, helping them to learn," she said. "It's almost like I can relate to them in some strange way."

* * *

Like Amy, I had a virus which didn't show up on any of the tests that were ordered.  The 105 fever proves there was a virus, the problem was, the person who was with me when I collapsed didn't know if I had medical insurance and didn't want to run up a big hospital bill that I couldn't pay, so chose to care for me at home.  With no ER documentation proving that I had the fever, doctors are free to tell me that I'm mistaken, I never really had a virus, just psychological problems.  Yet, no psychiatrist can ever find the problems that are supposed to be there.

All the medical findings on Amy are shown by researchers to exist in CFS.  Yet, the Bee runs a long article about her "once in a lifetime" disease, while refusing to publish any of the research advances in an article relating them to CFS.  Why?  Because they once took the stance that CFS isn't a real disease and don't want to contradict themselves.

I'd urge all CFS patients who recognize Amy's symptoms to post a comment to the article and see if we can convince the Bee that they're going overboard on something that looks a lot like CFS ... if only most CFS patients were treated in the hospital instead of staying home because they think it's "just the flu".