Reposted here with generous permission from Jo Best. Her “straight”version is here.
Celebrating 25 Years of Patient Abuse and Medical Negligence at St. Bart’s, London, 29th November.
Adapted from the blurb on St. Bart’s website about the event: http://www.bartscfsme.org/
Speakers
Professor Simon Wessely, Professor of Psychological Medicine
Professor White, Professor of Psychological Medicine
Dr Esther Crawley, Consultant Senior Professor
Trudie Chalder, Professor of CBT
Dr Sarah Peters, Senior Lecturer in Psychology
For Clinicians
To celebrate 25 years of patient abuse we are planning to host a training day where internationally renowned speakers, practitioners and patient don’t-carer representatives meet together to look at developments in mistreatment, bogus research and new innovative ways of working around all the evidence that ME is an organic disease.
The CFS/ME Service at St Bartholomew’s Hospital has a strong commitment to psychological research and promoting its dominance over clinical practice to provide abuse for patients with this complex condition. Both reflective clinical practice and absolutely-no-evidence-based treatment form an integral part of service delivery.
As the service has evolved, an important development has been the way the service has been able to get away with murder by abusing and wilfully neglecting the ME patient community. Through establishing a completely powerless role for patients and carer representatives, both patients and carer representatives have attended service meetings and formed a helpful link between other patients and the service about issues of absolutley no interest to us at all.
The training day will offer the opportunity for people from different areas of incompetence to share information together. Self-styled experts, clinicians, patient abuser representatives, mal-administrators and ill-informed general practitioners will be able to review the past and learn of future atrocities. Participants will be able to: be a part of the celebration; share mis-information; receive the wrong training and/or contribute towards the dumbing-down and skills debasing of others.
There will be time to have our cake and eat it at the end of the session, as we have done for the past 25 years!
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm
Barts protest event page
http://www.facebook.com/event.php?eid=156600244382628
Overview
For 25 years or more, the field of Myalgic Encephalomyelitis has been dominated by our small but powerful group of psychiatrists, inspired by our esteemed leader Professor Simon Wessely, supported by his wife and Chair of Council of The Royal College of General Practitioners, Clare Gerada, and ably assisted by Professors Peter White and Michael Sharpe. We even went as far as re-naming the disease Chronic Fatigue Syndrome. Followers of our Wessely School include some psychologists and several clinicians who have also taken a “special interest” in ME/CFS.
Our Wessely School has proudly caused untold damage to thousands of people in UK who are genuinely sick and disabled by ME, and millions around the world, given that we have been influential at the USA’s Centers for Disease Control and in many other countries. Our own criteria for CFS are far broader than those for ME and we place a strong emphasis on the symptom of chronic fatigue. As chronic fatigue is a symptom of many conditions, including mental health disorders such as anxiety and depression, this has led to many patients being given the label of CFS when their doctor can either find no physical cause of their fatigue, or hasn’t bothered to investigate fully to find a cause, upon our advice as given in the Royal College of Surgeons Report:
“Perform the minimum number of investigations” and “Provide appropriate and unambiguous reassurance when there is no evidence of relevant physical pathology ” … which there isn’t going to be if you don’t run the tests, ha-ha!
Our broad definition of CFS has also successfully muddied the waters of both research and treatment of ME/CFS and has led to it being described as,“mysterious”, “complex”, “unexplained”, “controversial”; a condition which appears to have “sub-sets” of patients. This is all unnecessary nonsense, of course, and caused by our irresponsible imposition of the umbrella term of CFS for a number of conditions that have symptoms in common but which are not identical.
ME was first defined by Melvin Ramsay in the 1950s and has been classified by the World Health Organisation as a neurological disease since 1969 at WHO ICD-10 G.93.3: Post-Viral Fatigue Syndrome: Benign Myalgic Encephalomyelitis. Once our Wessely School had introduced the new term CFS, WHO interfered and annexed it to ME in 2004 to avoid the confusion that we had worked so hard to cause, and so CFS is also officially classified as neurological. As a member of WHO, the UK government accepts this classification and this was recently confirmed by the new coalition government. This is all rather irritating, but hasn’t prevented us from persevering in our mission to keep those patients that we have succeeded in portraying as lazy, work-shy, whingeing, weak-minded, scrounging ME/CFS hypochondriacs under our mighty cosh.
After all, we have spent the past 25 years insisting that the symptoms of ME/CFS are all in their tiny minds, in the face of an abundance of evidence to the contrary, and on the basis of no scientific evidence for our own bogus hypotheses, and we will not allow all that hard work to go to waste, nor relinquish our stranglehold on this condition, without a fight. Others may speculate as to the reasons why we have chosen to do this; were we megalomaniacs with a lust for power and delusions of grandeur, power and wealth, which we have succeeded in making real? A testament to the magic of visualisation techniques! Or, as our dear friend and sympathiser Dr. Esther Crawley hinted at in her talk at an ME group in Dorset this year, is it just about the money; after all, we have made a very good living from appointing ourselves self-styled experts on ME/CFS and selling our propaganda like hot cakes .. kerching!
Let us just ponder the facts and the consequences of our significant achievements.
ME/CFS patients have been subjected to such appalling medical neglect and abuse that it is hard to grasp that this has been allowed to happen in the developed world. Admittedly, there are some doctors who have been able to think for themselves and put the needs of their patients first and foremost. A list of such errant doctors is currently being compiled in the ME community. Fortunately though, the majority, including many hospital consultants, have succumbed to our propaganda against ME/CFS, denying the very real and physical disease that it is, and have adopted our Wessely School approach, espoused in the National Institute for Clinical Excellence (NICE) Guidelines for what we prefer to call CFS/ME. We would have dropped the “ME” altogether if it were not for the whiney objections of dratted patient groups. A minor defeat for us, as it hasn’t made a blind bit of difference to their treatment.
Our Wessely School view and advice strongly influences and consequently dictates policy of the MRC, NICE and thus NHS doctors, ME (CFS) NHS clinics, the DWP, the media and thus public opinion.
The Medical Research Council
Funding has only ever been awarded to us for our psychological “research” on CFS/ME; none to those pesky biomedical researchers. We waffled that proposals for biomedical ME research have not been of sufficient quality. and have got away with our own poor quality and multiply-flawed psychological research. We have simply ignored the findings of some 5,000 privately-funded UK or international biomedical research papers, or else twisted them to fit our own warped ideas about ME/CFS.
The Guideline Development Group for The National Institute of Clinical Excellence re: CFS/ME
NICE guidelines for CFS/ME state that the only evidence-based treatments for the condition are Cognitive Behaviour Therapy and Graded Exercise Therapy, even though this “evidence” is highly questionable and disputed by real medical and scientific experts in the field. Even in the light of the recent FINE trial that showed that neither CBT nor GET are effective in the long term for ME/CFS, and after publication of the recent ground-breaking research showing a very strong link between ME/CFS and a newly-discovered family of retroviruses, akin to AIDS (MLVs and a variant XMR) NICE has announced that there is no new evidence to warrant a revision of their CFS/ME Guideline. This is an extraordinary triumph for us, even more so, given that there was a judicial review of the Guideline last year, with first-class testimony and evidence presented that the Guidelines are not fit for purpose.
http://www.meactionuk.org.uk/nicejr.htm
In addition to influencing the NICE guideline, our Wessely School has successfully published a huge amount of literature and training materials for GPs and health practitioners on ME/CFS, all according to our own distorted and scientifically unsubstantiated beliefs about the illness and thus deeply damaging to patient care. Much of what we say about ME/CFS patients constitutes mass libel and slander, in fact, and even incitement to hatred and harassment of a disability group. Examples of evidence of this are legion and truly shocking. and we are, therefore, to be hugely congratulated for getting away with it all.
The CFS/ME NHS clinics
These are based on the NICE guideline and our psychiatric model of ME/CFS. Even if the lead clinician is not a psychiatrist, the “treatment” offered is still only CBT and GET, perhaps with some anti-depressants thrown into the mix to keep the buggers subdued. What started as a malicious rumour has now become a widely held belief that many patients given the label of CFS do not have ME. We call our clinics “Fatigue Clinics”. As we very well know, fatigue is a symptom of a large number of health conditions, which require completely different medical management from ME; therefore results from our treatment programmes at such clinics cannot, in truth, be extrapolated to the ME/CFS patient community, yet we manage to get away with it as the truth is merely an irksome obstacle, easily masked by smoke and mirrors, fudged, and our speciality, psycho-babble. The majority of ME patients find no effective help or treatment from these clinics and are often made worse by them. Like, we care!
The Department for Work and Pensions
Our involvement with the health insurance industry (UNUM/ATOS) has influenced the DWP in their handling of claims for disability benefits. One of the largest disability insurers, reported that in the years from 1989-1993, disability claims for ME/CFS had increased by an average of 460% and in order of insurance costs, ME/CFS came second in the list of the five most expensive conditions, three places above AIDS. In 1994, the US Centre for Disease Control (CDC) developed another case definition for CFS that excluded all physical signs of disease (“signs” are observable by doctors, whilst ‘symptoms’ are described by patients). Both Simon Wessely and our trusty colleague, Michael Sharpe, were involved in this 1994 re- definition of ‘CFS’. ATOS now deals with benefits claims on behalf of the DWP. The mess that this system is in and the appalling consequences for people genuinely sick and disabled by ME/CFS and other conditions is legendary. Yay!
Notes on Insurance and ME/CFS:
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
“There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is blatant conflict of interest here. The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body”. http://www.erythos.com/gibsonenquiry/Report.html
The UK Department of Health
Recent letters from the Secretary of State for Health, Andrew Lansley, and some MPs, demonstrate the incomplete and incorrect advice they have been given on the subject of research and treatment ME/CFS, so we’re set to continue on our merry way under the new coalition government … tee-hee-hee. Hip hip hurrah!
Sing along now, “For we are jolly good felons …. and so say all of us!!!!!!!
Summary
This school of psychiatrists and their followers have made a very good living out of denying that ME/CFS is an organic disease and claiming it under the umbrella of their own profession. They cleverly concede that there may have been a viral trigger, but insist that the ongoing symptoms are psychosomatic and due to false illness beliefs. They are the ones with false illness beliefs. This has been to the severe detriment of thousands of patients with ME in UK alone, including young children, and millions world-wide, given the influence UK has over US and the rest of the world. Thanks to them, patients with ME/CFS have endured decades of medical ignorance, neglect and abuse. This is all on record. They should now admit that they were wrong and retire gracefully from the fields of both research and “treatment” of ME/CFS. Enough is enough. This has to stop now. Let the event at Bart’s on 29th November be a farewell party, then we can all REALLY celebrate.
For further reference
Patient abuse: Ean Proctor
http://www.cfscentral.com/2010/06/hard-cell.html
Interview with Ean Proctor
http://www.youtube.com/watch?v=OJmis85FM4s
Patient abuse: Ryan Baldwinhttp://www.mountainx.com/news/2010/091510local-family-feels-vindicated-by-breakthrough-research
Patient abuse and death from ME (CFS): Sophia Mirza
“Unexplained” death of patient with CFS diagnosis: Vanessa Bellamy
http://www.hertsad.co.uk/news/death_of_quite_fit_and_well_harpenden_woman_a_mystery_1_443234
Patient death: suicide: Lynn Gilderdale
http://www.lynngilderdale.net/tribute.html
Hummingbirds ME Memorial List
http://www.hfme.org/mememoriallist.htm
CFIDS (ME) Memorial list
http://www.ncf-net.org/memorial.htm
Oslers Web
CFS Central
CFS is our resistance
http://www.cfstheresistance.com/
http://www.cfstheresistance.com/the-murky-waters-of-an-invisible-illness.php
M.E Action UK
Dancing with the Sandman Blogspot
http://dancingwiththesandman.blogspot.com/
M.E Free For All
Tymes Trust
Invest in M.E
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.investinme.org%2Findex.htm&h=c6ebe
M.E Research UK
The Whittemore Peterson Institute
CFS Untied
Read “The Straight Version” here:
Celebrating 25 Years of Patient Abuse And Medical NegligenceJo did a fabulous job with this piece.
Jo, this is the most brilliant piece I have EVER read! (Not to take away from
the work of our also brilliant Khaly and others!) Thank you Khaly, for being
so generous of your blog space XXOO.
I am so impressed how you wrote this, Jo, I am breathless, so I cannot even
say more for fear of sounding trite. Much love and better days ahead!
Unbelievable. Thank you Jo and Khaly. One of the best, most disturbing and bittersweet pieces I’ve ever read.
P.S. That should have said thank you to Jo for writing this, and Khaly thank you for posting. Jo, it’s incredible.
Aren’t they having a big cake!
Twits
I totally agree Kathryn…one hell of a piece of writing Jo, which blows me away! Thank you for sharing it here Khaly.xxx
I enjoyed reading this, and I agree with all of it, but I especially like this:
“They should now admit that they were wrong and retire gracefully from the fields of both research and “treatment” of ME/CFS. Enough is enough. This has to stop now. Let the event at Bart’s on 29th November be a farewell party, then we can all REALLY celebrate.”
Patricia Carter
XMRV+, 24 years ME
As Sita says this is a most bittersweet piece of writing, I cried with laughter and sadness at our plight.
Jo you truly have a vocation for writing, thank you so much for all your writings. You are another one of our stars.
Khaly, thank you for giving us all the opportunity to read this from Jo. Yur very generous.
great piece of writing Jo
These people are abusers at best and guilty of manslaughter and even Murder in many cases. Even in the face of such overwhealming scientific study to the contrary they continue to spout there psychobabble and denial of our NueroImmune disease. Apalling! Great writing and great piece Jo. Thank you for spending your limited energy and health to shine more light on all of this.
Thank-you very much for all your kind comments, I’m really touched, and join in thanking Khaly for the compliment of publishing this on her blog, and for all she does.
I have a confession to make, which is that although I contracted ME 18 years ago, I was “blissfully” unaware of the politics behind the science that was keeping us all sick all these years and causing others to go on to contract this awful disease too, until I joined our global on-line ME/CFS community via Facebook six months ago. I feel particularly, as I’m sure we all do, for the children, young people and the severely affected. I owe an emormous debt of gratitude to all our staunch ME-Advocate friends and campaigners for all their perseverance and hard work on behalf of us all in the face of chronic illness, and for the information and guidance they’ve so freely given me over these past few months, that these two pieces are based on.
Special credit here though, to Annette Barclay for the idea for the St. Bart’s protest and the recent blood ban protest, to Jan Laverick, Andie Pring and Gabi Jacobs for their hard work inspiring the Early Day Motion for biomedical ME research tabled by Jan’s MP, and the email campaign for a change of UK policy by the Dept. of Health and the MRC, and to Gabi for her article, “Murky Waters of an Invisible Illness”, which I drew on heavily for these 2 pieces. They are all inspirational writers and advocates, and it’s wonderful that there are so many more, far too numerous to mention. Here endeth my Oscar acceptance speech!!
Best wishes to all for better health in the future and thanks again.
Oh, thanks everyone for stopping by and reading! Jo, this was such a great piece. I am very happy to have helped put it out there. It needed to reach as many people as possible!
Jo, you are a very quick study if you just jumped into the political deep end six months ago! My own story is similar….I’ve been at this a while now, but I spent a lot of years ignorant. I got shoved into the deep end by a friend from Incline. Once in, though, there’s no turning back!
Thanks again Jo. This was a stunning piece of work!
Khaly
Well done to Jo for such a great piece and thanks to Khaly for posting it here.
On Monday the 29th there is a tube strike in London so it is unlikely that many will make it to the clinic.
That doesn’t need to stop using “blowing out the candles” on the Barts Party cake.
Please send them a message by card, email, letter or fax.
On the website for the protest I have some samples and also some addresses
Please send me more if you can.
Barts submission on draft NICE guidelines.
I haven’t read everything here (read it a few days ago) but I thought I’d highlight some of the things that the Barts service sent in in response to the draft NICE guidelines in 2006 (follow link in my name or else http://bit.ly/bwkzsH ). They are very hardline.
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Jo this is so brilliant! I loved it! Although I didn’t know at times whether to laugh or cry as it is so true. I would love to see this published in print – must be somewhere or someone who would….. it so good! Thank you!
ME patients who’ve found ways to be healthy again must be studied if progress is
to be made. Erik Johnson and numerous others are well through mould avoidance.
It’s not uncommon for ME patients to be almost back to full health while near
equatorial seas. But subpar medical practitioners aren’t interested in helping us. Criminals such as Simon Wessely and William Reeves should get off the government tit and pay damages owing to their victims.
Thanks for alerting us to problems at St. Barts, Jo and Khaly.
Who are actually going to attend this fatigue fest? (doctors, nurses, fysiotherapists)
Maybe it would be a good idea for someone to actually go down there on the 29th, position themselves at the entrance, and point a little (video)camera in their direction.
Brianne, Great idea. Sadly, we have a tube strike in London on that day. The city can be gridlocked and impossible to move around in.
I have put in a FOI request about the guestlist though. Also to ask how much this will all cost and who is funding it.
020 34656941 Pauline Stone at ME Clinic
or for appointments!! 020 346 55974 Patricia Baker
I had a good laugh although I am a CFS sufferer ; I haven’t been diagnosed, abused and neglected by the medical profession in the UK but the same type of things happened to me in the US and in my original country France.
Unfortunately I went through medical abuse inside my own family since my own sister is a medical doctor and believed against all evidence that I was only depressed
Thanks to all that I am now completely disabled
praline
The influence of Unum and other disability “insurers” (actually they are premium collectors who invest the money and don’t pay claims) cannot be overemphasized. Unum is behind almost all the criminal and immoral treatment of ME/CFS patients in the US and UK and has been for decades. They are still doing it. See my blog:
http://biomedicalmecfs.blogspot.com/2011/01/unum-is-still-doing-it-to-disabled.html
Since writing that post I have found a lot more evidence that they are still doing what they’ve been doing. A 2008 case in the US, of a CFS sufferer who won, after a lot of appeals, harassment and stress: http://scholar.google.com/scholar_case?case=3736254457285322723&hl=en&as_sdt=2&as_vis=1&oi=scholar
This is from the “Money Trail” page of the writer of a novel: “Chronic Fatigue Syndrome: the Novel” by Caroline Anderson: http://mysite.verizon.net/vze16suma/id7.html
Thanks to Jo and Khaly for this lovely piece of satire. The “speakers” list should include Thomas Watjen Unum CEO, who received $8.79 million in remuneration in 2009. Unum has renamed the Vulture Award (for most claims denied) the Columbo Award, but they are still rewarding amoral employees for denying claims in any way possible.
See my satire piece here: http://biomedicalmecfs.blogspot.com/2011/01/new-years-resolution-contract-aidshiv.html