Health activism has taken a truly disturbing trend in recent years. Some activists, furious at scientists whose research findings don’t fit their own beliefs about a particular illness’s causes and cures, have launched campaigns of abuse and even violence against those scientists.
They don’t like the message, so they set out to destroy the messenger.
And, sadly, it’s working. The ugly and relentless nature of these campaigns is causing many good scientists to turn away from doing research on certain diseases and medical conditions. That’s a development with serious consequences, and not just for people with those particular illnesses. Basic research on one disease often leads scientists to a deeper understanding of the biological underpinnings of other illnesses.
On Sunday, Britain’s Observer newspaper reported on how one group of activists — those who believe that scientists are suppressing the real cause of chronic fatigue syndrome — have targeted scientists with a campaign of “intimidation, attacks and death threats.” Writes science editor Robin McKie:
One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risks being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.
In addition, activists — who attack scientists who suggest the syndrome has any kind of psychological association — have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.
“I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse,” said Professor Myra McClure, head of infectious diseases at Imperial College London. “One man wrote he was having pleasure imagining he was watching me drown. He sent that every day for months.”
McClure’s “crime”? She published a paper that suggested other research linking the syndrome to the virus XMRV had been mistaken due to laboratory contamination.
A rejection of the scientific process
Yet that’s how the scientific process works. One group of scientists reports a finding and then others try to replicate it. The process continues until a consensus is reached.
But some activists apparently only want the findings they agree with published.
Another hate campaign was launched earlier this year against the authors of a paper in the Lancet that reported cognitive behavioral therapy could help relieve some of the symptoms associated with chronic fatigue syndrome, reports McKie. For the same reason, Dr. Esther Crawley, a leading British expert on chronic fatigue syndrome and a consultant pediatrician at Bristol University (she was the first person to identify chronic fatigue syndrome in children under the age of 14), has been deluged with hate mail.
“You evil bastards … time is running out for you so you have [sic] better start denouncing your flawed inhumane therapy and pray to God for forgiveness,” reads one of the messages.
Demands for agreement
Ironically, neither Crawley nor any of the other activist-targeted scientists featured in the Observer article believes chronic fatigue syndrome is purely psychological. They told McKie that they agree with the activists that the illness may have a genetic component and that outside triggers — including some kind of virus infection — may also be involved.
But that’s not enough for some activists, who apparently want the scientists to state unequivocally that only organic external factors are behind the illness.
Dr. Simon Wessely, professor of epidemiology and psychiatry at the Institute of Psychiatry at King’s College London and a leading target of chronic fatigue syndrome activitists for his psychiatric approach to the treatment of the illness, told McKie that he now has his mail X-rayed. He’s also set up, at the request of the British police, a system of speed dialing and “panic buttons” that enables him to alert authorities immediately when he needs their help.
Wessely also gave up his research on chronic fatigue syndrome a decade ago, although he still treats patients.
“I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones,” Wessely told McKie. “That has taken me to Iraq and Afghanistan, where quite frankly I feel a lot safer — and I don’t mean that as a joke.”
I can accept that there are people who won’t let facts interfere with their opinions. What I can’t accept are people who threaten and intimidate legitimate scientific inquiry. Somehow the anti-empirical crowd is managing to attack the fundamental premises on which science, and therefore progress, is made. People who attack legitimate scientific iquiry not only violate the rights of the researchers, they violate all our rights to a better understanding of nature and the world.
Regarding the ‘CFS militants’ article – this appears part of a sustained, possibly planned media campaign, that started some months ago, which may have been interrupted by the English riots: or this latest article may have been printed to capitalise on current fears of violence resulting from those riots.
There are a number of problems around these articles/radio programmes:
1. The allegations are unsafe. For example, the comment by some unknown that “you will all pay” was publicly deemed a ‘death threat’ (when it indicated possibly more a prediction of eventual public accountability for the mistreatment of ME/CFS sufferers). Ironically, David Cameron has used the phrase “you will pay” towards rioters in recent days, without it being deemed a ‘death threat’!
2. But particularly unsafe has been the categorisation of legitimate action by ME/CFS sufferers and their supporters such as requests under FOI legislation, official complaints through various public agencies etc. as ‘malicious harassment’, or ‘abuse’ or ‘intimidation. If one reads these articles or listens to the radio programmes one will see how legitimate actions are juxtaposed with alleged acts of criminal harassment to present this idea that legitimate actions are criminal harassment! It is quite shocking how it is done.
3. After making allegations of violence and harassment etc. These articles then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. As objectors have been insinuated as ‘extremist’, no chance is given to objectors to put forward their objections. Even where the ‘ME’ charities have been interviewed, the representatives continue the unsafe allegations and conflation of legitimate behaviour with ‘abuse’, ‘harassment’ etc. It should also be noted that certain charities have been critiqued by many sufferers and supporters for many years for not representing their concerns even adequately.
I was once falsely accused of ‘personally harassing’ Professor Wessely by a Wikipedia administrator, claiming Wessely had told him this himself. I take an opposing public position to Professor Wessely’s, both on a political and academic level. I have NEVER harassed Professor Wessely. I have never even written to him, though he once wrote an unsolicited (and somewhat discomfiting) email to me, after a critical comment I once made about flaws in psychogenic explanations was once used in a parliamentary debate in 2004. When I wrote to Professor Wessely’s employers to ask him to clarify he had had no part in the libel against me on Wikipedia in 2007, they refused to provide that clarification. A few weeks ago in the BMJ, I found that people who wrote to Professor Wessely’s employers were juxtaposed with alleged ‘death threat’ makers, as harassers!
I’m also someone who has publicly and offically complained about a recently published trial of psychological ‘treatments’ in the Lancet (the PACE trial) and some really unsafe (I mean dangerous to patients) claims made on the back of this trial. This is not harassment, unless any official enquiry, complaint, or testimony counts as such, which it doesn’t, of course. I also don’t think reasonable objection or complaint is more dangerous to a public figure, than being a soldier on active service in Afghanistan or Iraq, like those soldiers killed or disabled in those war regions, for example.
Unfortunately this article is not entirely accurate. This has not been a matter of radical activists threatening scientists. It’s been a matter of people who have been ill with a crippling disease for decades having been denied treatment due to the psychologization of this illness by these scientists.
Patients are not reacting to the fact that these scientists could not find XMRV in their studies. Patients are reacting to the facts that these scientists used improper cohorts, improper assays, and improper methodology.
Patients are not demanding that science go one way or the other. Patients are demanding that science be conducted and driven by science, not by politics, and that proper scientific method is followed.
Patients are not demanding scientists or government officials to say things that are not true. Quite the opposite. Patients are demanding that their rights to view documents under FOI are respected, which they have not been.
Simon Wessely has been responsible for much suffering in the UK, by creating an atmosphere where critically ill people are sectioned and consequently die, and where children are forcibly removed from their homes. After decades of his psychiatric applications to biological illness, patients are demanding appropriate science, medical care, and help.
Please research the background of articles before you jump on bandwagons. There is a whole lot more to this story than what meets the eye.
Myra McClure has obviously been caught up in this maelstrom, and has probably done nothing to deserve the abuse she is apparently receiving.
But the author of this article is wrong when she says “Ironically, neither Crawley nor any of the other activist-targeted scientists featured in the Observer article believes chronic fatigue syndrome is purely psychological.”
In fact, Wessely School psychiatrists (of which Simon Wessely is the chief proponent) have for decades been actively campaigning behind the scenes to get CFS officially classified as a psychological disorder, rather than a disease with a physical cause. And Wessely School psychiatrists have consistently pushed forward their own views ONTO THE WHOLE MEDICAL ESTABLISHMENT that CFS is a sort of imaginary disease that sufferers are faking.
Even if you are bedbound with CFS, Wessely School psychiatrists think that you are a kind of fraud.
Because of the very strong Wessely School influence on the medical profession, doctors have been brainwashed in medical school to believing that CFS is a sort of imaginary disease that sufferers are faking. So for CFS patients, this means little or no care from their doctors. And then you wonder why there is so much anger in the CFS patient community?
Journalists need to ask Wessely School psychiatrists very tough and probing questions: like why did Wessely School psychiatrists campaign so hard (from the 1980s onwards) to get CFS officially classified as a psychological/behavioral disorder in the World Health Organization’s categorization of diseases? And what were these psychiatrists’ connections to the disability insurance industry at that time?
What ever happened to high quality, in-depth investigative journalism? We need less obsequience from journalists and article writers, and more hard talk — of the type usually dealt out to politicians.
It is sad to see that the MinnPost has repeated the claims of British researchers of alleged threats made against them without any critical investigation of the facts. Professor Wessely and his like-minded colleagues present no evidence to back up their allegations. If credible threats were made, where are the police reports of the incidents? These allegations appear to be part of a media campaign attempting to neutralize a sea of appropriate, well-founded complaints about how the disease has been dealt with in the UK.
The timing of these allegations of threats of violence closely follows the publication by Carruthers et al. of the International Consensus Criteria for diagnosing ME compiled by 26 researchers and clinicians from 13 countries (Journal of Internal Medicine; Accepted Article: doi:10.1111/j.1365-2796.2011.02428.x). These new criteria strongly oppose the Wessely group’s beliefs.
Professor Wessely is not a credible source. He has a long history of involvement with the insurance industry and denial of the overwhelming evidence that myalgic encephalomyelitis (ME), as chronic fatigue syndrome should properly be called, is a physical disease. ME has been recognized as a neurological disease by the World Health Organization since 1969. It
His group of psychiatrists in the UK has stubbornly resisted scientific evidence and promoted a psychogenic theory of the disease. Tragically, they have gotten the ear of the government which uses their theories to promote cheap ineffective behavioral treatments for the disease. The effect of their unproven theories has been to deny adequate medical treatment and support for hundreds of thousands of ME sufferers in the UK for decades. Given the enormity of harm that Wessely’s views have caused, there is naturally a good deal of strong feeling against them.
The neglect and mistreatment of ME sufferers in the UK is the real story – not these exaggerated and unsubstantiated claims of threats.
I think it’s important to note that this sort of “health activism” is occurring in Britain, not the US, where mainstream medicine is beginning to acknowledge the psychological component of chronic fatigue. The diagnosis is easily confirmed with a simple test for adrenal insufficiency. Years of unrelenting stress cause the adrenal glands to become impaired, leading to physical exhaustion. An important component of treatment is to identify the major life stressors and then examine the emotional issues at play. Changing the way you think about yourself is often the key to recovery.
ME goes back 60 years and CFS only 25 years The term CFS/.ME is not recognised by the World health organisation and the three phrases are not interchangeable
There has been a legitimate academic debate about which model – biomedical or biopsychosocial – best fits the illness ME and the majority of researchers who treat and publish peer reviewed papers on this illness show that the biomedical model
predominates in academic circles across the world. Only a small( but it appears a powerful) minority of psychiatrist really believe the view of the ‘Wessely school of thought’. There are many psychiatrists and physiologist’s I could point you to who would completely debunk this outdated and false illness believe that they have of what ME really is.
Those who wish to do research into the physical causes have not been able to secure funding because of the bias on the MRC panel and more than 90% of official grant-spend on ME/CFS in the past decade has gone on research intocognitive-behavioural approaches to help patients manage their symptoms and cope better.
These are only palliative interventions and even the advocates of these approaches recognize that they benefit only a small minority of patients over and above standard medical care, and are not the answer to the biomedical enigma at the heart of ME or CFS or even chronic fatigue.(other)
The MRC set up an expert group to look at ME and CFS research after they were lobbied in a constructive manor, which had nothing to do with stigmatising psychiatric illness. It was found people with ME and CFS did have a genuine grievance and the MRC set up an expert group on CFS/ME to look specifically at biomedical research priorities. If you had asked a current member of this expert group you would have realise the MRC are now trying to put this matter right and have produced a list of research priorities, have ring fenced £1.5 million for biomedical research and are right this minute assessing those research application.
Three charities – Action for M.E., the ME Association and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS).
The biobank will be situated at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London.
From Monday 8 August, having completed their feasibility studies, principal researchers Dr Eliana Lacerda and Dr Luis Nacul, London School of Hygiene and Tropical Medicine, will be inviting patients from a dedicated disease register to submit blood specimens. The blood will then be specially prepared and stored for use in future biomedical studies.
Professor Stephen Holgate, Chair, MRC Population and Systems Medicine Board, says:
“This initiative has my full support. The biobank project is an excellent example of how the M.E./CFS charities are working together within the national framework, established by the Medical Research Council expert group, for taking forward the UK’s research effort into this poorly understood chronic condition.”
Invest in ME has plans to set up a UK centre of excellence for transitional biomedical ME research and Let’s do it for ME! is a patient-driven campaign to raise awareness and vital funds for this project which will provide clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.
This means all our UK main charities are behind biomedical science research
Meanwhile world wide we have Just had the new Myalgic encephalomyelitis: International Consensus Criteria published – Source: Journal of International Medicine, July 20, 2011 and this note-The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process.In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
People with ME, CFS and chronic fatigue deserve better understanding than what this article portrays
Mrs I Thorpe ME survivor for 23 years
ME or CFS as it has been misnamed in the United states is a horrifyingly disabling disease that often cripples its suffers.
There are over 4000 peer reviewed papers showing the physical abnormalities involved in ME or CFS. Mr. Wessely and the British Pschologists in charge of ME or CFS research choose to ignore most of these findings and have created a faulty psycological model to explain this disease which can be deadly. Many who are too ill to get out of bed are forcibly removed from there homes and put in Psyche wards just because they are physically ill in the UK.
One patient who was totally disabled my ME/CFS was actually thrown into a swimming pool and almost drowned as part of his “CFS treatment”
This is the real story in which patients are being forgotten. I challenge any investigative journalist to look into this horrid situation and share this crime against patients with the world.
http://www.ncf-net.org/memorial.htm
This seems somewhat akin to the “tools in your box” argument that a surgeon will recommend an operation for a sick patient, an internist will prescribe medication, and a psychologist will begin psychotherapy.
Some members of the American Psychological Association used to consider the very painful and stressful jaw misalignment called TMJ syndrome a psychological problem to be cured by counseling. Any dentist will refute that and cure the misalignment by correcting the patient’s bite and/or jawbones.
Early today in the UK Simon Wessley was interviewed about attacks on him. Why doesn’t the BBC – and Susan Perry – do some homework? Why was there no balance in this reporting? Wessely cannot understand why patients should attack him although the reason has been explained to him carefully by leading advocacy organisations.
1. He refuses to listen and it is that which frustrates people.
2. He continues to say that he is treating ME, yet ME is a neurological illness according to the classification of diseases endorsed by the World Health Organisation. (WHO-ICD 10 – 93.3) He is not a neurologist and he does not treat the neurological aspect.
3. People want treatment and research into the real disease, ME.
4. Psychologising a physical disease does not help, indeed some patients have died. The cruelty perpetrated by Wessely psychiatrists will become yet another chapter in the dark history of psychiatry.
Further, it is frustrating for ME patients to hear this biased reporting all the time.
Frankly, this is beginning to sound more like propaganda than reporting and if Susan Perry considers herself to be a serious reporter, I hope she has learned not to simply repeat the propaganda of others.
18 year old ME sufferers ends her own life.Another young life lost because there is no biomedical treatment for ME.The Wessely school of psychiatrist are getting away with Murder but we have to put up and shut up and not say a word against them. you probably will not print this as it is a link but please do read the comments under the article before you do. You may then understand why PWME are so upset by Wessely et al.people should never judge what they do not understand
http://www.thisissurreytoday.co.uk/Parents-want-lift-taboo-discussing-subject/story-13149023-detail/story.html?forumid=331851
As a medical scientist and a host of this condiditon, I can safely say that the work of Wessley and his cronies is junk science.
I have first hand experience of this “treatment” of his design and it left me in severe pain and bed bound for months. This treatment is only fit for patients with burnout of atypical depression, and not ME/CFS patients. For ME hosts this treatment is the eqivalent of cruel and unusual punishment, as classified under the UNHCR.
Due to my researches, I can say that there was and is very little good biomedical science being generated in the UK.The majority of it is psychiatric and psychological snake oil science.
The UK media are not doing their job properly.
They are not investigating the other side , those researcher and medics who rare doing good quality reseach and treating patients sucessfully (of which you have to pay for as ot’s not on the NHS). Or that of the patients, who have been fighting for decades for valid biomedical research and effective treatment on the NHS ( not to mention better treament from the welfare and benefits agancies). Plus, what we have to go through each and every day, fighting for treatment, the meagre benefits we have to live on and pay for treatment
All we want is the recognition of ME as a physcial illnes and get the research and treatment needed for this condition and the respect from the the public, politians and the medical profession. We are not mailingeres, we are physically ill with a neurological condition. Nothing else. Please treat ME seriously
My Open letter to The Guardian.If any other reporters are reading this please take note and remember it before you regurgitate rubbish from other reporters
Dear Jessica
I understand you are looking for Personal stories regarding the revelation that suicide rate are high in people with chronic illness. My story below will show you that one does not do not have to be depressed or have any inclination of snuffing out ones life flame indeed it is the opposite we so want to live a full and active life. It is the need to end ones continuous suffering of pain ,distressful physical illness symptoms and abuse by medics media and politics that lead to the decision of committing suicide
There are many people like me who are severely ill with ME.Where do we go when there is nowhere to go.
I was stuck down in such intolerable pain after I had tried to swim myself better. One of my GP’s had been to a fatigue conference led by one of the Doctors who have been complaining of death threats etc in all major papers this week and who had come away with the take home message that exercise was the only way of eradicating my illness. My heath disintegrated so badly in the few days after I had begun swimming sessions that I was rushed into hospital as a medical emergency. I was disbelieved by the specialist who’s care I was under.I was not allowed help to get to the toilet and I could see they were watching me carefully.I was offered a paracetamol for the excruciating pain that was so bad my teeth were clamped together. I asked to go home four days later because I knew I was not being believed I was ill and this disbelieve was all because my GP had told them he suspected I had ME.
The day after I came home my husband called an ambulance as I was deteriorating badly and I could not breath.(Years later I found it was due to the intercostal chest muscles which had cramped.). I was evicted on a cold damp day in just a flimsy nightdress. I was denied a blanket and a drink of water. and told it was all because I had not had a baby. As I lay in bed at home wondering where do people like me go when there is nowhere left to go, I suddenly realised I had lots of unused antidepressant tablets scattered all over the house. Unused because they were useless to me,they made me sick, and I was not depressed but very physically sick. Sick and nowhere to go. I pleaded with my husband to find out all the pills and he brought to me one and a half pints worth. I looked at them and said. ”Please flush them down the toilet for me I really don’t want to take them but I have no choice but to down the lot”. The sole reason for me not taking an overdose was because both myself and my siblings have had to live with the suicide of my mother when we were just young teenagers.My mothers suicide also relates to the lack of care, support and understanding of an ME type illness. My family know what it is like to have to live with the grief ,blame and life long after trauma of a family member committing suicide and I just could not do that to my family again..My husband said to me he had been told ‘secretly’ not to help me at all. I spent 18 months in a dark quiet back bedroom. My sole carer was my full time working husband.I had been denied even an assessment visit from social services. I was bed bound and could not lift my hands to feed my self. and could hardly swallow and talk. I could not go to the bathroom yet I had spent 12 hrs a day, without assistance just laid there in intolerable pain waiting for my husband to come home.. He hid me there to protect me from being sent to a mental ward where I did not belong. What I needed was pain relief and I will note until this point I had never taken even a over counter pain medicine in my entire life.
My open letter continued it would t fit in one posting but it is so important it gets through
ME is a physical illness as defined by The world health organisation. and there are many research papers that show physical abnormality yet here in the UK all lay people get to see and hear are the views of these few Psychiatric researchers and clinicians who have a very biased view not based on this centuries system biology technology.their views are not supported by the WHO and they have views which has been discredited by science. This is why we are getting upset with those few psychiatrists and their very powerful friends portraying ME people as some sort of hysterical, militant, socially backward members of society with false illness beliefs. All we want is the same respectful research as other illness have managed to procure. Nothing more and nothing less. This most recent media attack on this very physically sick and neglected group of patients initiated by some Medics who profess to care for them does nothing to prevent more suicides ,and assisted suicides, of people like me who have done nothing wrong to society expect to come down with an illness that is not only disbelieved by some but ridiculed as well..Nothing has changed in more than too decades of my being physically ill.The behaviour of these few psychiatrists,I believe one of them has even turned to BBC world news to spread his sob story worldwide, and all the news reporters who are regurgitating this old news are literally KILLING people
Mrs I Thorpe