Monday, June 21, 2010


ME/CFS patients do hard time in
mental wards and foster care

In the fall of 1986, a young British boy named Ean Proctor became ill on a school trip to Wales.  Once home on the Isle of Man, his decline continued, and a neurologist diagnosed him with Myalgic Encephalomyelitis (ME), known in the U.S. as Chronic Fatigue Syndrome (CFS).  There had been an outbreak of the disease in Wales when the boy was visiting.

His case proved severe, and by 1988 12-year-old Ean was confined to a wheelchair and could no longer speak.  Ean’s neurologist suggested the Proctors consult ME/CFS researcher Dr. Simon Wessely but were not told, according to Ean’s father, Robin Proctor, that Wessely was a psychiatrist. 

At the hospital, “Wessely pinched his skin a bit and looked at him from the foot of his bed,” Ean’s mother Barbara Proctor recalls. “Then he took us to another room and told us that Ean didn’t have ME and that children don’t get it.”  When the Proctors told him that they believed he did have the disease, Barbara Proctor says, “Wessely accused us of playing doctor.”

Soon after, in response to a request from lawyers for the child care department, Simon Wessely issued a report [click on the blue type to view the report] obtained by CFS Central in which he attributed Ean’s symptoms to psychogenic causes and explained why he favored placing Ean in a mental ward. “Not withstanding the absence of severe depression or psychoses, Ean has a primary psychological illness causing him to become mute and immobile,” Wessely wrote.  Below Wessely’s signature were the typed words “Approved under Section 12, Mental Health Act, 1983”.  Section 12 enables authorities to consign patients with psychiatric disorders to mental hospitals against their wishes and is referred to colloquially as “sectioning.” 

Despite the Proctors’ ardent protests, Ean ended up in a psych ward for mentally ill children for several months. A doctor and two social workers escorted Ean there by ambulance while the boy cried.  Several years later, according to an interview with Dr. Anne McIntyre, herself an ME/CFS sufferer, Ean said that one of the social workers told him they were taking him away because his parents were letting him die. 

In the ward, “One of the children was screaming, ripping the rooms apart, turning the beds upside down,” Barbara Proctor remembers.  The doctors and nurses, she says, believed Ean was faking his illness and forced him to feed himself, which took hours because his arms were so weak.  He sat in soiled clothing because the nurses wouldn’t take him to the bathroom.

The staff, Barbara Proctor says, observed their interactions with Ean through a one-way mirror and disapproved of them helping their son. “They thought we were making him ill.  Ean was in a wheelchair, he couldn’t speak, his hands were in tight fists.  He was all skin and bones—he looked like something out of Belsen [concentration camp].  How could he do anything?” his mother asks rhetorically.  Ean communicated with his parents by nodding to letters of the alphabet.  To compel him to move, the staff placed Ean facedown in a swimming pool without water wings.  Too weak to dogpaddle, he sank underwater and had to be rescued.  “It was out of the dark ages, the way Ean was treated,” Barbara Proctor laments.

Five months later, after a protracted court battle that nearly bankrupted the Proctors, Ean was finally released into the care of his parents and ME physicians. “We often say if we hadn’t gotten Ean out of there, he wouldn’t have come out alive,” his mother says.  One of his new doctors had treated several children during the Welsh ME/CFS outbreak; Ean also saw a local homeopath. Only 4 to 8 percent of ME/CFS patients recover, but, astonishingly, Ean was one of the lucky ones.  In the reverse order in which they began, his symptoms slowly resolved, until he was well.

Recounting his ordeal on camera with Dr. Anne McIntyre, Ean said he was “very bitter” about the way he was treated.  “Most of the doctors,” he said evenly,  “didn’t really want to understand what the illness was about.”

Wessely's reports 
Ean Proctor declined to be interviewed for this article.  “We’re a small island,” Barbara Proctor explains.  “He doesn’t want anything plastered in the papers again.”  However, Ean gave me written authorization to publish some of his medical records, which his parents obtained legally during their court case.  In a June 3, 1988, letter to a social worker about Ean [click on the blue type to view the letter], Wessely wrote,  “I have absolutely no doubt that the primary problem was psychiatric.  My initial impression was that Ean’s condition was a form of hysteria, in other words, his apparent illness was out of all proportion to the original cause.”

The psychiatrist went on to write, “Ean’s parents are well meaning, but are very over involved in his care, and are certainly seriously over committed to one particular diagnosis.  I have considerable experience in the subject of ‘myalgic encephalomyelitis,’ and am absolutely certain that whatever the status of that diagnosis, it did not apply to Ean.  I feel that Ean needs a long period of rehabilitation, part of which will involve very skilled management of separation from his parents, and the restoring of his independence, and providing an escape from his ‘ill’ world.  For this reason, I support the application made by your department for wardship.”

Two months later, Wessely wrote in another medical report [click on the blue type to read the report], “What is wrong with Ean?  The symptom that is most distressing to Ean, his parents and medical advisers is that Ean is mute…. I have considerable experience of both the post-viral fatigue syndrome and child and adult psychiatry, and would submit that mutism does not, and cannot, occur in a true chronic fatiguing illness, but can, and does occur, in psychological illnesses.” 

Today, Simon Wessely won’t discuss Ean Proctor.  “I’m not going to talk about individual cases,” Wessely says.  “I’m a psychiatrist.  And you’re talking about events that took place 25 years ago now, aren’t you?  You can interpret that as you wish.  It’s not right for me to talk about individual patients.  I’ve read some of the ludicrous conspiracy theories about many many things, and I’d just like to say that I do not recognize myself in any of those things, to be honest with you.”

XMRV study
More than 20 years after Ean Proctor’s sectioning, Wessely remains a major player in ME/CFS research.  Critics cite that as a longtime proponent of the disease as a psychological or biopsychosocial malady in which a person’s negative “illness beliefs” cause physical symptoms, Wessely was not the ideal person to supply the patients for the retroviral XMRV PLoS One study published in January that failed to yield any positives in 187 ME/CFS patients.  An earlier Science study conducted by U.S. researchers found the newly discovered retrovirus in 67 percent of 101 patients, and more sophisticated testing later showed that 98 percent of patients were infected.  (Read “Blood Feud” Part 1 and Part 2 for more information on these studies.)

As for Ean Proctor, he is now 35, engaged to be married and working full time.  An avid mountain biker and hiker, he has defied the odds and remained healthy.  He emerged from his ordeal with his sense of humor intact, the Proctors say.  The old adage that what doesn’t kill you makes you stronger appears true in his case.  According to Barbara Proctor, during his stay in the psychiatric ward, a physician told Ean that he wouldn’t be coming home ever again and would, instead, be sent from the Isle of Man to mainland England to be adopted.  “That is mental cruelty to me,” Barbara Proctor says.  “But Ean only told us that story a few years ago.  I asked him, ‘Why didn’t you tell us then?’  And he said, ‘You had enough to worry about.’ ”

Sophia Mirza
The sectioning of children and adults diagnosed with ME/CFS still occurs in England.  According to Criona Wilson, in 2003 after daughter Sophia Mirza declined treatment of her ME/CFS with cognitive behavioral therapy (CBT) and graduated exercise therapy (GET), the 30-year-old woman was sectioned.  (GET, many ME/CFS physicians believe, can be injurious to patients, and CBT is often of limited benefit.)  A police officer broke down her front door, and a psychiatrist and social worker hauled her away for a two-week stint in a mental ward where, according to her mother, her fragile health deteriorated, and she never recovered.

Mirza died in 2005; her autopsy revealed spinal cord inflammation and kidney failure.  Neurologist Abhijit Chaudhurit told the British news show Meridian Tonight that the autopsy concluded that 75 percent of the sensory cells in Mirza’s spinal cord were significantly abnormal.  “She deserved,” he said, “to have been seen by a neurologist and managed by a multi-disciplinary team rather than be left in a psychiatric hospital.”  Criona Wilson told Sophia’s powerful story on camera.

Ryan Baldwin
Because ME/CFS is still so misunderstood, social services in the U.S. occasionally places children with the disease in foster care while the parents are charged with medical neglect and investigated for factitious disorder by proxy.  Better known by its defunct moniker Munchausen’s by proxy, it’s a severe psychiatric disturbance in which parents—usually mothers—make their children ill as a way to bring attention to themselves. 

Such was the case of North Carolina boy Ryan Baldwin, who was pulled from his home in January 2009 when he was 16, placed in a series of foster homes, made to exercise though it made him sicker and allowed no contact with his parents except in court.  It took nearly a year before his parents were cleared.  Ryan made it home in time for Thanksgiving.  In January, according to a local newspaper account, Ryan told the court that his time in foster care had been “a living hell.”


This article, “Hard Cell,” is copyright © CFS Central 2010.  All rights reserved.   You may quote up to two paragraphs from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is from CFS Central.

The three documents Ean Proctor authorized me to post on this site are copyright © CFS Central 2010.  You may not reprint these letters or forward them.  Instead, forward CFS Central’s URL to share the material.  

Coming up: An examination of ART (anti-retroviral therapy) in the treatment of HIV and ME/CFS.


  1. I can attest to there being a mild epidemic of ME like illness in Wales in 1986. I had already been ill with ME in it's relapsing and remitting forms for 16 yrs by then (and didn't in fact get a diagnosis until 1990) but in 1986 I had yet another relapse, and so many other people were falling foul of whatever virus was precipitating it, I remeber local media coverage concerning the problem.
    Indeed colleagues of mine identified my illness there and then using the media coverage (I was walking wounded at that time and still able to work to some degree) though I was less inclined to accept it then as I had never suffered depression and media in the UK were trying to equate the two.
    Fortunately at that point in time I was not abused by medics in the way that Ean Proctor was, BUT I had that in store for me 6 yrs ago when a very bad ME crash led me to terrible and inappropriate prescibing of meds from which I'm still trying to claw my way back to some sort of acceptable par (though I have been largely housebound since 1994).
    The way people with this illness are treated is still shocking 25 yrs on.....

  2. This is the stuff of nightmares!

    My sincere condolences to all the patients and their families who have been subjected to such cruelty.

    It is good to remember Dr. Simon Wessely's deeds, as his words are often confusing. He did not deny, he did not apologize; and he is still very influential in the types of treatment available to PWME/PWC's.

    Thank you, Ms Kitei, for this very complete report.

    Kelly Connor

  3. Despite the large numbers of true psychiatric patients--such as those with bipolar disorder and schizophrenia--in need of care, Dr. Wessely decided, unaccountably, to spend his career psychologizing an organic biomedical disease, ME/CFS.

    Excellent reporting like Ms. Kitei's is now exposing the foundation of canards on which his ideology rests.

    At a time when psychiatry is the only medical specialty that does not depend on blood tests for diagnoses, Dr. Wessely's questionable interpretations serve to highlight the subjective nature of his field.

  4. I would argue that "mutism" most definitely DOES happen in cases of CFS/ME, Mr. Wessely. It's called AUTISM.

  5. Thank you for posting this. I'd heard about Ean Proctor, but hadn't seen documentation until now. The story about the swimming pool is so horrifying that it's hard to believe it happened.

  6. Thanks for posting this story and the supporting documents. I have a personal email from Wessely saying he has never "sectioned" anyone. Semantics, I guess, as he simply signed the recommendation for sectioning, but didn't actually break down the door and do it himself. Sophia Mizra was "sectioned" as a "danger to herself" because she couldn't go to a government "clinic" for talk therapy and exercise.

    In the US, a faction in the psych industry is presently trying to get CFS categorized as somatization, formerly called hysteria, meaning mental, not physical. Getting set up for involuntary "commitment" due to "a danger to her/himself"?

    It's very Stalinesque, this desire to disappear those with ME/CFS into the mental illness prison. Doctors, parents and caregivers who treat the illness as real are also being demonized and persecuted. UK Dr Sarah Myhill has lost her license to practice in large part due to her treatment of ME patients as physically ill instead of using the UK government guidelines that call for psychological counseling and exercise "therapy", which are promoted by Wessely and his cronies as the only acceptable "treatments".

    Youtube has several videos of and about Ean Proctor, Sophia Mizra and Ryan Baldwin.

    See the Thud Experiment for a view of psychiatry:

  7. I am writing with so much saddness in my heart. I am sad for all the people (including myself) that have been treated in the psychological and psychiatic framework when our bodies are unable to make the physical requirements of such 'so called' psychological rehabilitation. I was yelled at, neglected, degraded, and demoralised for months in the most dehumanising ways by angry staff in a maternity hospital, as my seriously ill body failed to do what I needed it too, in order to go home with our baby. I had been told that my ME/CFS would be better and that having a baby was a good thing for me. My treatment robbed my child of the minimal amount of energy I had. I got my hair chopped off (something that had always made me feel like a woman - a human); staff convinced my support system that somehow they were enabiling my "lasiness". The abuse extended to our newly born child as somewhere in their logic they thought that their neglect and ill treatment of my child would motivate me out of my ME/CFS. It couldn't and despite the torture of this method it didn' just served me to accept the most extreme outcome to protect our babies life. It is no lie that our lifes were trully at risk many many times during that time. Of course there has been no redress as I am still too unwell and any energy I have belongs to our child not the abusers. I hope that when the reality is known that those people bare the guilt of there treatment.

  8. Germaine Benson Could you please add the the following link for the following
    petition that my borther is doing. My brother has been suffering the last 8 years with ME. This has simply stopped him living and doing normal
    things, but there is not a lot of help for people with this problem....
    If he gets enough signatures the local Mp is going to produce
    this petition to parliament hopefully so they can help.

  9. A small inaccuracy. "Approved under Section 12 of the Mental Health Act" refers to a clinician having special experience in the diagnosis and treatment of mental disorder. This is for the purposes of the assessment of a person under the act (as opposed to the actual section of the act under which a person is detained).

    Ean Proctor was probably detained under Section 3 which is a 6 month compulsory hospital treatment order.

  10. Hi Mindy, many thanks for this and your work is much appreciated by the ME/CFS community on Facebook too. I tried to find you on there. Do you have a Facebook page/account as it would be good to see you on there. Thanks again for your work.

  11. Jo,
    Thank you for your kind words. I suspect that I'm the only Mindy Kitei on Facebook :-).

  12. Simon Wessley states he as experience in ME/CFS im sirry i dont think sectioning a person with ME is apropriate treatment .The Procters should have sued the butt of wessley and his crew !!! beg beg disgrace , i hope wessley rots in hell !!!

  13. I guess in a way I have been on of the lucky ones, I got forced into accepting CBT and my therapist has only worked with me on pacing myself nothing more. If I wanted to do anything more than get out of bed to see to my needs she would take me through how I could harness energy to do it and plan with me my being in bed for days or weeks afterwards. Only seen her once, rest of time has been via phone as she realised it was to much for me to go to her, but only allowed 12 sessions - we have stretched them out over two years as having someone who understood me being stuck in bed and isolated with family not understanding has been a big mental crutch, but she certainly never tried to 'cure' me or even suggest that CBT will cure me. She has just tried to give me skills for using the little energy I have for the best use possible

  14. In the Ryan Baldwin case, the local Department of
    Social Services (DSS ), used the Factitious Disorder by Proxy excuse as a method to acquire
    Federal Special Needs Funds and fraud the US
    Government out of Medicaid funds, in order to
    enrich the coffers of corrupt local government and Judicial system officials.

  15. Simon Wessely should be imprisoned before he does any further harm. Criminal negligence? Medical malpractice?
    Thank you for writing about these well-documented cases Mindy.

  16. This Wessely character makes me sick! He should've been stripped of his medical license years ago and thrown in jail for attempted murder! It disgusts me how ME/CFS patients are being treated in the UK!(and other places to a lesser extent). This is the only time I'll say thank God I live in the US right now. I only pray that the people trying to get CFS classified as psychological fail miserably. I am really starting to think there is something that our governments don't want us to find out about ME/CFS, as in maybe vaccines as causation? My case was triggered in 1992 by an MMR vaccine then Mono within 24 hours of getting it. I am convinced the vaccine damaged my immune system and that even though I was carrying Epstein-Barr virus, it wouldn't have become full-blown Mono.

    All I have to say is there is no way I will EVER get sent to a psych ward against my will for this disease. Over my dead body!

  17. Hi Mindy--

    Please send a copy of this post to Nigel Hawkes. See this article as to why:

    The article is called Dangers of research into chronic fatigue syndrome.
    "Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition"

    And yes, he is an idiot.


  18. Wessely is just one man - who is paying him to do this?

    1. Unum Provident. If ME is re-branded and re-classified as a somatoform disorder or a form of psychosis, then medical and income insurance companies only have to pay out for something like 4 years. If it's a medical/physical condition, which we all know it to be, then they have to pay out for life... they're doing the same thing to Fibro and other medical conditions that as yet don't have any set diagnostic tests, and where the cause is still uncertain (despite thousands of peer reviewed articles showing clear physiological patterns in people with ME/these conditions)

  19. The UK Medical Research Council has not funded a SINGLE biomedical study into ME/CFS in 30 years, yet funnelled millions into psychiatric or 'biopsychosocial' research projects such as the PACE Trial debacle. Many of these studies have been masterminded by wessely himself or wessely-school psychiatrists.

    The MRC is currently considering applications for the £1.5m funding it announced in January, and is due to make its decisions by November.

    If you feel strongly that NO MORE taxpayer money and patients' hopes should be wasted on psych studies, and all the money should go to BIOMEDICAL studies, please, please sign here:

    Please also repost widely, tweet, email and pass along to anyone you think will support us.

    Thank you.

  20. This old article on Prof. Wessely is interesting

  21. Mindy, the idea of 'blaming mother' for psychiatric illness has a long history in Western mental health care. It is an outdated concept from the psychoanalytical model, which is upheld by mental health policy and law unfortunately. The good news is in parts of the world (including the UK) parents are increasingly seen as allies in the care of family members with psychiatric disorders, which is replacing the old view you depict Wessley as holding. In my estimation Wessley forwards only one of many views about psychiatric disease, but unfortunately he has gained a strong foothold in ME/CFS overseas even if his ideas are more tempered these days. The notion that parents cause mental illness doesn't wash in this day and age and can be rejected on these grounds. My point is if it doesn't wash in mental health care, then it doesn't wash for ME/CFS... period.

    Having said that I want to say I have a problem with demonizing Wessley, since there are a myriad of people who share his views and other views we may, or may not agree with. There is no single villain or victor in ME\CFS in my estimation. Quite frankly, I am not interested in a polarized ME\CFS debate and I have dropped out of the online discussion. I am up for a review of total ME\CFS science and collaboration among global partners for effective, coordinated, and targeted ME\CFS political action.

    I will just add my husband was killed by neglectful mental health policy and I am angry. I have learned there isn't a single person to blame....just an ailing system in desperate need of reform, which needs our targeted help to accomplish.

  22. Oh no, Simon Weasely rates a special place in the pantheon of bastards in medical malpractice - he did the most, of anyone, to push his cockamamie theories in the US and the UK. And, according to Malcolm Hooper, he WAS being paid - by UNUM, the world's largest disability insurer - they control roughly half of all disability insurance contracts nationwide. And his buddy Peter White has been Chief Medical Officer of Scottish Provident Insurance Company and Swiss RE, a multinational re-insurer, the whole time he has been Bill Reeves BFF and a paid consultant for CDC's program on CFS.

    The swimming pool story is horrible - I have seen Wessely deny that he had anything to do with such a thing had, and in the latest BMJ it was used as an example of the excesses to which patient animosity to Wessely had gone (accusing him falsely of this). I had heard this for years, and am very grateful that you have compiled all the evidence together - thank you.

    Keep wondering how long this can go on ...

  23. ME is not known as known as Chronic Fatigue Syndrome.

    ME/CFS is misunderstood because there is no such thing.

    Creating and aiding and abetting that which we complain about is not advocacy.

  24. Dr. Wessely cites the following paper, in which he gives his views on mass motor hysteria, in his paper Postviral fatigue syndrome: time for a new approach.
    David AS, Wessely S, Pelosi AJ.
    Br Med J (Clin Res Ed). 1988 Mar 5;296(6623):696-9. Review.

    Mass hysteria: two syndromes?
    Wessely S.
    Psychol Med. 1987 Feb;17(1):109-20.
    On the basis of a literature review it is concluded that mass hysteria can be divided into two syndromes. One form, to be called 'mass anxiety hysteria', consists of episodes of acute anxiety, occurring mainly in schoolchildren. Prior tension is absent and the rapid spread is by visual contact. Treatment consists of separating the participants and the prognosis is good.

    The second form, to be called 'mass motor hysteria', consists of abnormalities in motor behaviour. It occurs in any age group and prior tension is present. Initial cases can be identified and the spread is gradual. Treatment should be directed towards the underlying stressors but the outbreak may be prolonged.

    In mass anxiety hysteria the abnormality is confined to group interactions; in mass motor hysteria abnormal personalities and environments are implicated.

  25. I don't understand why UK patients can't sue Dr. Wessley and UNUM. What does anyone have to lose if you've lost everything else ? Including your friends, family and health! Is their not one parliamentarian or advocate well enough to begin the process? This isn't to say by any means I don't think patients are doing enough but aren't there doctors to stand up to UNUM and testify in parliament? I just cannot believe how severely sick these patients are and they are getting no care. How is this possible? Can someone from UK explain to me the process of how a government can lock up records till 2087? Or whenever it is that the government of UK has locked MRC files?? How is this possible? Doesn't Scotland Yard or M-6 look into these things. This man should be in jail plain and simple yet he's being hailed a hero in BMJ. He is a villain and so is anyone who could believe anyone would choose to crest the symptoms of ME. How dare someone !!! How dare they !!! Where are your civil rights?

  26. ME is not CFS.

    There is no such thing as ME/CFS; this is another made up term that can mean different things. US groups continue to put out this misinformation.

    The misinformation and misdiagnosis is harming ME patients.

  27. Yes - we in the UK are asking all of those questions and getting no answers. WE need whistle blowers in the right places ideally but thus far it seems there is no one with enough integrity or too little to worry about losing to come forward. One day..

  28. We do know the answer. We don't need whistleblowers. We don't need so called advocated feigning horror and disbelief and playing to emotions. We don't need to wonder how this happened or how long it will continue. It will continue as long as we conflate ME and CFS.

    ME is not CFS. This explains it clearly. ME/CFS is even worse and more disingenuous as it gives the obvious impression that they are the same. It only keeps CFS in play and obscures the reality of ME. Then we have these complicated convoluted essays and rebuttals to PACE, Lightening process, and now the DSM. On and on it goes. And speaking of DSM; while we lament, the reality is that CFS is practically by definition a somatic disorder, so what do we expect (see Dr. Hyde's explanation in The Psychiatric Label):

    The Nightingale Definition of M.E.

    Since the Nightingale Research Foundation’s
    publication in 1992 of the textbook, The Clinical
    and Scientific Basis of Myalgic Encephalomyelitis /
    Chronic Fatigue Syndrome (Hyde, B, 1992), there
    has been a tendency by some individuals and
    organizations to assume that M.E. and CFS are the
    same illness.

    Over the course of two International
    Association of Chronic Fatigue Syndrome (IACFS,
    formerly the American Association of CFS)
    conferences, there have been suggestions that the
    name CFS be changed to M.E., while retaining the
    CFS definitions (Holmes, G.P., Sharpe, M.C.,
    Fukuda, K) as a basis for such change. This does
    not seem to me to be a useful initiative: it would
    simply add credence to the mistaken assumption
    that M.E. and CFS represent the same disease
    processes. They do not.

    M.E. is a clearly defined disease process. CFS by
    definition has always been a syndrome.

    The Psychiatric Label:

    Unfortunately many physicians and some senior
    persons in governments, including Great Britain,
    Norway and to a lesser degree the USA and Canada
    treat CFS as a psychiatric illness. This view has
    been arrived at by some physicians’ interpretations
    of the CFS definitions from the Center of Disease
    Control (CDC).

    Consider the following:

    *d) If you are still not convinced, check the Internet
    for the definition of: DSMIII Somatization
    Disorder. (DSM) You will find that there is
    little substantial difference to distinguish the
    DSMIII definition from the 1988 and 1994
    CDC definitions of CFS. It is difficult to believe
    that the CDC medical bureaucracy is not aware
    of this similarity.

    It is thus understandable why the insurance industry,
    as well as some psychiatrists and physicians, have
    simply concluded that CFS, if it exists, is a
    somatization disorder.

    I believe it essential to define clearly Myalgic
    Encephalomyelitis, returning the definition to its
    clinical and historic roots and complementing this
    information with the certitude of modern scientific

  29. How did Ean manage to get better? Was it a progressive return to health and would you know if he has had relapses along the way?



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