Saturday, December 8, 2012

A moving call for justice follows from Stonebird

A moving call for justice follows from the 'Stonebird - The lived
experience of Severe ME' website:


By Linda Crowhurst, 7 December 2012.

When is the neglect, abuse denial negation and downplaying of ME by
wrongful psychiatric involvement and interpretation going to stop?

How many more people have to die?

How many more people who are tormented and physically suffering , in
agony for years, to decades, will have to endure the misdiagnosis,
misinterpretation by doctors and others and the misrepresentation in the
NHS and the media ?

When will sense, honesty, integrity, genuine concern ,compassion and
scientific research with proper, specific ME criteria, win through?

It is devastating to have an incurable disease, but to have one that is
disregarded and negated, knowing you are left on the edge of survival
and society because a group of powerful people representing vested
interests chose to spread confusion and untruth about this serious
physical disease , chose to complicate the illness and bury it in a sea
of generalised fatigue conditions is not only shocking and unfathomable
to the sufferer, it is way beyond unacceptable.

Why is this continuing? Who has the integrity to speak the truth and
stop sitting on the fence? Who has the integrity to challenge the lies
about ME?

Who is willing to acknowledge the abuse for the past 2 decades that we
with a genuine neurological disease have had to put up with?

Very few it seems.

I want to get well. I want to get better. I want to know what is the
physical cause at the centre of my disease. I want proper medical
investigation. I want the tests that everyone else is entitled to on the
NHS, except if you have the label ME. I want this senseless negation and
waste of lives to stop.

The day I was labelled with ME, respect and medical equality went out
the window. The hope of finding our what has gone wrong in my body
disappeared from view that day and has never returned.

Twenty years on there are very few practitioners able to diagnose,
willing to seek, able to understand. Most are compromised or don't
believe in it or don't believe its as bad as it is or believe its all or
mostly in the mind or sign up to the misrepresentation and focus on
generalised fatigue, ignoring the most serious neurological symptoms

How wicked and wrong and misplaced is that? How cruel ? The most
severest, the most damaged and tormented are left vulnerable frail and
unsafe in a system that is failing them on every level. The medical
system is unable to offer what is needed.

That is a frightening place to be when you don't even know if someone
will understand your physical dysfunction or accept it or take it in to
account when they recommend treatment, anaesthesia, advise.

When you don't know if they even believe you are severely physically
ill, when their intervention can harm you, worsen your symptoms, harm
your body, leave you devastated and traumatised for months and years

When you have to trust people to represent you, when they have no real
clue about your physical nightmare reality.

When even if someone says they understand ME, yet still they are
misinterpreting it.

When the focus is on fatigue and all the complex multi system
dysfunction is ignored or pigeon holed into a pet theory to suit them
rather than look at the reality and impact,when risk assessment is not
done because the illness is not understood or acknowledged properly.

When are we going to be treated with equality ?

When are we going to get consultants who know about the neurological
disease ME and who can actually make recommendations that help not
damage us?

When will research actually be done on the correct group of people who
fit in to the ICC criteria for ME ?

Watered down research populations mean watered down results, waste of
money, lack of helpful findings, further confusion over who the research
is actually for.

When will we feel safe to have treatment because it will be appropriate,
relevant, address the disease process,be suitable and effective, not
risk our lives and our health, not based on guess work, based on no
proper medical testing; fanciful risk taking ?

I don't want to be a guinea pig for people's pet theories anymore. I
want a proper medical service and respect for my disease. I want medical
support and people who know what they are doing , in my life. I don't
want to be frightened by the severity of my illness, left to get on with
it and try and figure it out because the alternative of involving people
is to risk abuse and further harm.

I simply do not want to hear that any more people have died or killed
themselves, because of the stark, physical ,tortuous reality of having ME.

What more does it take to get heard and honoured?

When will there be a public inquiry?

Where is the public outcry?

Stunningly silent. Pitifully small.

Linda Crowhurst Dec 7 2012

PLEASE write to UK Parliamentarians to call for such an urgently-needed
inquiry into all matters pertaining to UK ME and CFS policy. A polite
letter to the House of Commons Health Select Committee Chairman and your
own MP will suffice but better still to write to ALL members of the
committee if you can: and keep writing until they can ignore us no more.
For further information and helpful materials for writing to Parliament
do follow the links at the top of the webpage at:

Thank you for your time.

Anglia ME Action, 8 December 2012.
[email protected]

Insufficient Data / by Occupy CFS

Insufficient Data
Jennie Spotila/ Occupy CFS
December 4th, 2012

One of the most frustrating aspects of coping with CFS is the lack of
definitive data. A PubMed search for "chronic fatigue syndrome" yields
4,877 results (as of today), but as a patient on the front lines I have to
make treatment decisions based on theory, supposition, and anecdotal

Case in point: I'm wearing a heart rate monitor and reducing my activity to
stay below my anaerobic threshold based on a few studies that show CFS
patients have disruptions in their energy metabolism. There is even a
published case study showing that following this pacing method and short
duration exercise leads to improvement in functional capacity and activity

But because my anaerobic threshold is so low, I exceed my heart rate limit
just by climbing 12 steps. An expert advised me to reduce my activity to
stay below the heart rate limit, even if it meant stopping halfway up the
steps to rest or using a shower chair. Another expert endorsed the use of
beta blockers to lower my heart rate. That topic is worthy of a separate
post, but there are patients who have benefited from this approach. Sue
Jackson has written excellent posts about her experience doing just that,
and she credits beta blockers with drastically improving her functional
capacity. When I asked the first expert about beta blockers, the expert
responded that beta blockers would not change my actual anaerobic threshold
but would mask when I was exceeding my limit by lowering my heart rate.
So how do I decide what to do?

The full post can be found here:

Thursday, December 6, 2012

CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference

CDC CFS Patient-centered outreach and communication activity (PCOCA)
Conference Call

**Monday, January 14, 2013

3:00 am - 4:00 pm EST *

Please mark your calendars for the next CDC Chronic Fatigue Syndrome (CFS)
Patient-Centered Outreach and Communication Activity (PCOCA) Conference

Call information will be posted and emailed in early January 2013.

* *

*Meeting Agenda*

3:00pm Welcome and Telephone Overview

3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention

3:15pm "Redefining Exercise in CFS through Reconstruction of
Aerobic Capacity"

Nancy Klimas, MD

Director, Institute for Neuro-Immune Medicine

Connie Sol, PhDc

Clinical Exercise Physiologist, Institute for Neuro-Immune Medicine

3:45pm Questions from CFSPCOCACall Mailbox for Guest Speakers

3:50pm Questions from CFSPCOCACall Mailbox for CDC

* Disclaimer:** Although the content of calls is directed to patients,
caregivers, health care professionals, and other interested parties, CDC
has no control over who participates on the conference call. Therefore
please exercise discretion on sensitive content and material, as
confidentiality during these calls cannot be guaranteed. *

* *

Please note that questions for the Guest Speakers and CDC can be submitted
only via email at [email protected] If you would like to be added to
the call list, please send an email to [email protected]

* *
<[email protected]>

Attention Bloggers

Thanks to Roberta for this heads-up
Are you a syndicated columnist? Or do you blog?

Consider joining this professional organization - National Society of Newspaper Columnists (aka NSNC):

How to Find a Legit Work-From-Home Job | Next Avenue

Good links to websites with work from home jobs, too

Wednesday, December 5, 2012

Letter from the Countess of Mar to Professor Simon Wessely

Letter from the Countess of Mar to Professor Simon Wessely

[House of Lords Logo]

4 December 2012

Dear Professor Wessely

I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it is not surprising that I regard this belief with something less than amusement.

I wonder whether you recall the time when you were just getting your initial research into Gulf War Illnesses off the ground in mid-1998? I had given evidence to the Royal College of Physicians and Royal College of Psychiatrists Inquiry on Low Level Exposure to Organophosphate Sheep Dip which was published in November 1998. Your colleague, Professor Anthony David, was a member of the inquiry. I recall receiving a letter from you both to the effect that you were sorry that I had had reason to criticise your Gulf War research in the course of my evidence when, in fact I had not mentioned Gulf War research. You also asked to meet me. I recall correcting you on the facts and stated that I had no desire to meet you. I then received a number of telephone calls and letters, both to my office and my home, demanding that I meet you. I have to say that I regarded this as harassment at the time, though I did not see the need to contact the police. Eventually I agreed to accept your invitation to lunch at Gordon's Wine Bar behind Charing Cross Station.

I brought with me Ms Emily Green, an eminent scientific journalist, with your agreement. I shall never forget being astounded to find that, when we arrived at the appointed time, 12.30 pm, you had arrived early; bought your own lunch, and presented us with a bottle of water. Prior to the meeting you were very firm about the time, as you had patients to see at 2.00 pm. We discussed a number of topics, including whether you knew Elaine Showalter and whether you had ever advised the Department of Social Security on subjects such as ME. Some of your responses we found were economical with the truth to put it mildly. It was very shortly before 3.00 pm that you finally got to the point - you wanted me to help persuade the Gulf War Veterans to complete your questionnaire!

I think you need to understand that this encounter left a rather enduring and nasty taste in my mouth, not least because I had to buy my own lunch when you had invited me to lunch. Neither was I impressed by your deviousness in response to straightforward questions. This caused me to look more deeply into what you were doing and into your associations, most of which are now public knowledge. This, in part, helps to explain why I have reason to criticise some of your work.

I have also attended some of your lectures and have read reports of others. I have heard and read the extraordinary way in which you and some of your colleagues have denigrated people with ME and have tried (and to some extent succeeded) to persuade others that people with ME are not really ill at all; they merely have 'aberrant illness beliefs'. You have deliberately obfuscated the terminology surrounding ME by linking it with chronic fatigue and attempting surreptitiously to reclassify it as a psychological condition under the WHO ICD classifications. In doing this you appear to have totally ignored the first exhortation to doctors - "First do no harm". Yet when this beleaguered population has reason to look at your work critically you deny what you have said and written and plead persecution and harassment from the very people you purport to be helping. I would have thought that any thinking person would ask themselves why this is happening; would ask the individuals who are clearly angry what is angering them, and try to put things right. You are in an exalted position - a Professor of Psychiatry with all sorts of awards. Why on earth do you need to play the victim?

My personal experience with organophosphate poisoning taught me that there are members of the medical profession who are not prepared to "listen to the patient for they will probably tell you the diagnosis". I am fortunate in that I am articulate and determined and I have been put into a position where I can speak for others less fortunate than I am. If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way.

So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB on 2 November 1993 which was considering those with ME/CFS you said: "Benefits can often make people worse", yet in your letter to Dr Mansell Aylward at the DSS you wrote: "CFS sufferers should be entitled to the full range of benefits". Given that, in 1990 you had written: "A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined …… many of them, the usual findings of simulated muscle weakness were present" (Recent advances in Clinical Neurology, 1990, pp 85 - 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME.

I note that you do not hesitate to condemn statements from your critics as "the same old stuff that they have been saying about me for years". People with ME could be equally justified in their belief that you perpetuate the beliefs that you have long held that ME is a psychosocial behavioural problem and that you have totally failed to embrace the vast body of peer reviewed scientific literature that demonstrates damage to neurological, cardiac, endocrine and other systems in people with ME. I believe it was you who recommended that GPs should not indulge patients with too many investigations. This has meant that people with conditions that could have been treated have been misdiagnosed and neglected.

I have spoken strongly in defence of people with ME who have been traduced by you and your colleagues who have embraced the psychosocial behavioural model. I am not ashamed of having done so for they have few who will defend them publicly. The scientific evidence is heavily weighted against ME being 'all in the mind' so, by deduction it must be the economic argument that prevails, to the disadvantage of the estimated 250,000 people who have ME. have you ever considered the savings to the exchequer and to the insurance industry if people with ME were properly investigated and treated so that they could return to work or education?

I take no pleasure in asking "bogus" questions and making speeches in the Lords. I would very much sooner your profession got its act together and spent some time studying the real effects of ME on patients and looking for solutions. We all recognise that chronic illness, whatever it may be, presents with psychological aspects. CBT can only be a management tool and GET reportedly does more harm than good for patients with ME/CFS as opposed to chronic fatigue.

Patients must be able to trust doctors and scientists. You have betrayed this trust. A scientist should be able to accept honest criticism. You have misconstrued criticism and turned it into harassment. You have much to answer for, so it ill behoves you to employ diversionary tactics in an attempt to portray yourself as the injured party.

I have written this as an open letter because so much of this debate has been in the open. It would be helpful if you would make your position with regard to people with ME/CFS utterly clear. Do you still believe the ME/CFS is "perpetuated by dysfunctional beliefs and coping behaviours" as you wrote in your 2002 CBT Manual for Therapists? If you do, please will you explain why no one got better with your model. If you do not, would it not be sensible for you to withdraw it instead of continuing to make the facts fit your theories as they appear to have been in the PACE statistics where you were in charge of the Clinical Trial Unit.

I look forward to hearing from you.

Yours sincerely

Countess of Mar

Tuesday, December 4, 2012

Your email by Dec 6 can convince FDA we need real treatments


Be a part of history with your "A C T I O N". Send in your email by December 6, to let the FDA Advisory Committee know what it's like to live with ME/CFS daily and that real treatment is needed.

Send To: Email address: [email protected]
Subject line: Treatment for Chronic Fatigue Syndrome - Ampligen

To the Advisory Committee Reviewing Ampligen:

(Please Cc: emails to Robert Miller at: [email protected])

Sunday, December 2, 2012

Help win $150,000 for CFS Clinic

Dear Nonprofit and Other ME/CFS Leaders:

The Canadians need our help in the Aviva Contest! Up to $150,000 in prize money could go to the new Complex Chronic Diseases Clinic in Vancouver, CA! The medical director is Dr. Alison Bested, a leading ME/CFS and FM clinician. The money won will be used for research equipment for a biobank. Research will benefit patients around the world affected by ME/CFS, fibromyalgia, multiple chemical sensitivities, and chronic Lyme disease.

The project qualified for the Semi-Finals in Round 1. Voting in the Semi-Finals runs from December 3-12. The top ten projects will be judged in the final phase of the competition to see how much each of them will receive.

The Aviva voting page for the project is at: may register through your Facebook account or at the Aviva Community Fund website. Once registered, voting just takes a second. You may vote once daily for ten days. For those who need help in voting, there is a "how to vote" video on the page.

There is a special Facebook page for the project at: Please Like the page if you visit.

You may also join an event page to get daily reminders to vote.

Please help spread the word about this contest to family, friends, and colleagues. Forward this email, Tweet, or Share on Facebook.

Working together, we can win this competition for ME/CFS!

Thanks for your support in past online contests, which has yielded over $369,000, and again in the Aviva competition! We really appreciate your help!


Faith Wong
Member of the ME (ME/CFS) Fundraising Group

Where is the Prize? | Psychology Today

"The unwell and disabled life asks nothing more than constant bravery."
* * *
And if your disability is CFS, no one recognizes the bravery.  It actually takes more to survive with CFS than it does to deal with, say, cancer, because if you have cancer everyone's falling all over themselves to praise you for your courage.  No one says anything like that to me.  No one rallied around to help -- my friends abandoned me.  No casseroles, no offers to help with chores, no charity asking what I need help with.
Cancer patients can look forward to a 95% cure if it's caught early, and then go right back to their lives.  CFS has a ZERO percent cure rate.  Oh, some of us go into remission, but the sword is always hanging over your head that if you do too much you're going to go into relapse.  Even when I was in remission, I couldn't go back to doing all the things I'd done before.  I looked pretty healthy at work, but no one saw that I'd go home and collapse, not budge off the couch -- no more hiking in the clean air in the mountains, no more softball, no more volleyball, just work and rest up for work.
My dad, a cancer survivor, was healthier at 80 than I was at 50.  When he passed away recently, everyone marvelled that he'd survived nearly 20 years after his cancer surgery.  No one marvels that I've survived more than 25 years with CFS.  No one marvels at how well I'm doing given that Modern Medical Science has nothing akin to chemo to offer CFS patients.  No, they're too busy scolding me for all the things I don't do.
No one threw me a 5-year survivor party or 10-year survivor, and if I somehow manage to survive for 50 years with a disease that's tried to kill me several times already, no one will throw me a party for that remarkable achievement either.
And I'm too busy bravely battling the disease to organize my own survivor party.