Psychiatry & M.E.
A History of Psychiatry misleading the public about M.E.
Please note that the use of terminology of ME/CFS is used in this blog because that is what the Psychiatric Collaborative uses. I have included quotes from these same Psychiatrists backtracking from the use of the anomaly ME/CFS stating that ME is not ME/CFS.
Chronic Fatigue Syndrome - Oxford Definition:
A report--chronic fatigue syndrome: guidelines for research. "Fatigue is the principal symptom: it is severe, disabling and affects physical and mental functioning; it should have been present for a minimum of 6 months during which it was present for more than 50% of the time."
Other symptoms may be present: particularly myalgia, mood swings and sleep disturbances." "Definite onset of symptoms, not life-long."
"Exclusions: patients with established medical conditions known to produce chronic fatigue; also patients with a current diagnosis of schizophrenia, bipolar disorder (manic depressive illness), substance abuse, eating disorder or proven organic brain disease."
There is a prove organic brain disease in Myalgic Encephalomyelitis, which disqualifies ME from the Oxford Criteria.
"I do agree that this terminology is unclear. It is what official bodies in the UK use. I apologise and agree that CFS and ME should be kept separate" - Michael Sharpe (25/04/2018), 06:41 (tweet from twitter)
Michael Sharpe on the inclusion criteria for The Pace Trial.
"That is right all participants met criteria for CFS and a subset also for (one set of) criteria for ME. All had to have fatigue as the principle complaint. I hope clear in the paper" - Michael Sharpe (the following tweet from twitter after the one above). Michael Sharpe admitting that people who qualified for a Chronic Fatigue Syndrome by the Oxford criteria were mixed up with people with Myalgic Encephalomyelitis (M.E.) on twitter.
"They would have excluded some of the epidemic cases yes, and rightly so. Whatever those epidemics where, they were not what we have all being calling CFS/ME for many years See section 12 of a chapter I wrote a quarter of a century ago. Still apposite" -
Simon Wessely (01/05/209), 10:01 (tweet from twitter)
Simon Wessely admitting that ME is not what they have been calling CFS/ME for all of these years.
"Dr. Wessely's work was mentioned. He has expressed his dissatisfaction with the guidelines and has written to the board to this effect. It was claimed that the DSS has misrepresented his work. He had included people with Chronic Fatigue Syndromes. There were other causes of this which people had recovered with exercise, whereas ME was made worse by exercise. The board had replied to Dr. Wessely and a copy of their reply was supplied to the ME representatives at the meeting" - from a Freedom Of Information (FOI) Request released Letter from 1992
Simon Wessely knows that "enteroviruses" were being thrown about as the triggering factor of Myalgic Encephalomyelitis in the late 80's as shown here; https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(89)92679-2/fulltext
Simon Wessely in this paper is trying to muddy the waters by connecting ME with affective disorders (Depression) as well as trying to introduce the idea of relabeling Myalgic Encephalomyelitis as Chronic Fatigue Syndrome even though in the 1992 FOI request letter quote above he is clearly saying that these are separate conditions. Simon Wessely has given two talks for UNUM the insurance company. One was in London in 1995 and was about ME & CFS, the other was in 2007. This is a clear conflict of interest.
Peter White tries to justify deceiving patients into believing that they have CFS or CFS/ME knowing that ME is a very different illness; with the blind faith that it might improve recovery times from the illness even though he's admitting its considered incurable.
This fraud by misrepresentation is still going on with labeling Myalgic Encephalomyelitis (M.E.) as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and breaks the Fraud Act of 2006. https://www.delta-net.com/compliance/fraud-awareness/faqs/what-is-fraud-by-false-representation
How M.E has historically been portrayed as within conventional medicine and by governments around the world as a result of psychiatry's influence?
The long-term follow-up of the PACE Trial Study which originally reported that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) produced a significant and sustained improvement, even recovery, for some people with myalgic encephalomyelitis or chronic fatigue criteria should in theory have been greeted positively by patients. However Michael Sharpe and colleagues found very little difference in outcomes at long-term follow-up between any of the four interventions (which included adapted pacing therapy and and specialist medical care) and the patient community expressed both anger and despair.
Anger because the media, along with many health professionals, has concluded that people can recover from ME/CFS through a simplistic approach to management involving exercise and positive thinking. Despair because the findings from the PACE trial have not been supported by patient evidence on CBT, GET, and pacing, which dates back to the 2002 Chief Medical Officer's Working Group report on ME/CFS.
The patient community feels so strongly about this issue that a petition asking for the retraction and correction of various parts of the PACE trial gathered over 10,000 signatures. The argument here is not with psychiatry. Mental illness is just as real and horrible as physical illness, and as with any long-term illness, some people with ME/CFS develop comorbid depression and other mental health problems. The argument is with a flawed model of causation that takes no account of the heterogeneity of both clinical presentations and disease pathways that come under the umbrella diagnosis of ME/CFS along with the conclusion that CBT and GET should to be used as one size fits all primary interventions for everyone with mild or moderate symptoms.
The only way to conclude if people on the PACE trial have recovered from ME/CFS is to re-interview them to confirm they are symptom free; have returned to normal health and functioning; have resumed any education or employment preceding the illness, and have ceased to claim any disability benefits.
Trial findings show cognitive behaviour therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome, but patients' organisations have reported that these treatments can be harmful and favour pacing and specialist health care. We aimed to assess effectiveness and safety of all four reatments.
David Tuller Feb 2019.
Last week, I reported that Bristol University had launched an independent investigation of research led by Professor Esther Crawley, at the request of the UK’s Health Research Authority. Today, the HRA released a report on the PACE trial that has portrayed it as a well-conducted study. GET/CBT supporters are framing this report as a vindication.
In contrast, Professor Bruce Levin, a well-known biostatistician at Columbia, used this choice phrase when discussing PACE–“the height of clinical trial amateurism.” Professor Levin gave a talk last summer titled “How NOT to Conduct a Randomized Clinical Trial,” with PACE as the case study. As I have often noted, epidemiology professors at Berkeley have used PACE in their classes as an excellent example of terrible research. I’ve mostly called it “a piece of crap.” https://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/
The criticism over the past 6 years has continued and include the recent critique by Geraghty (2016) who has strongly challenged the study’s findings. He has criticised the PACE trial for their reporting of treatment effectiveness, the definition of recovery and for the fact that the data are not freely available. ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists. We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law. We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments. This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors. Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.
ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists. We argue that this contestation is not simply about stigmatizing mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law. We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments. This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors. Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.
Greg & Linda Crowhurst
Psychiatry has been able, this last quarter of a century, to deprive my wife and tens of thousands like her, of basic medical respect, appropriate input, investigation and treatment, for her neurological disease. Psychiatry has spent the last 60 years spreading the untruth that Myalgic Encephalomyelitis (ME), a WHO G93.10.3 classified neurological disease, is a mental health disorder. Psychiatry has been allowed to dominate social, health and welfare policy in the UK, for decades on end. Psychiatry’s interference in Myalgic Encephalomyelitis must surely rank as one of the of the most shameful episodes in a profession accused of being ”. (Berezin 2013) If someone has any other physical disease, for example Cancer, there will be a consistent recognition of the symptoms and an understanding of what is required. Unlike people with ME, patients with Diabetes or Cancer or Multiple Sclerosis do not have to contend with.
What level of sainthood would you need To not be angry at the medical neglect, The tirade of psychiatric nonsense that continues to spout forth, And cover up the truth of real, physical disease, That leaves people
clinging to the edge of life In indescribable agony, with profound yet ignored, Incredibly serious system dysfunction?
Linda Crowhurst