Chronic fatigue syndrome
5 Mar, 10 | by BMJ Group
This week’s hot topic is chronic fatigue syndrome. The journal Science published a paper in October 2009, which suggested a possible link between a new virus (xenotrophic murine leukaemia virus-like virus) and the syndrome. Duncan Jarvies is looking at the evidence behind this link, and finding out more about the history and treatment of the condition. Richard Hurley takes us through what caught his eye on bmj.com week.
See also:
Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands
Science, chronic fatigue syndrome, and me
Chronic fatigue syndrome [25:01m]:
It will be a great day if the BMJ ever decides to pull it’s head out of it’s rear and take a look at the entire evidence base of CFS instead of promoting faulty theories which not only cannot be proven, but can’t even be tested, which is the exact opposite of what the discipline of science was created for.
As Prof. Wessely either seems incapable of understanding or of communicating truthfully if he indeed does understand, is that there is much more to the issue than patients objecting to ‘any suggestion of a social or psychological component to illness’. This is a prime example of Prof. Wessely’s bread and butter practice of obfuscating the real issues at hand and instead substituting his own unfounded theories and speculation in the place of honest discourse.
CFS patients don’t and never have objected to there being ‘a social or psychological component to illness’, they object to the ignorant supposition, in direct contradiction to thousands of papers comprising the biomedical research literature, that CFS is a primary psychiatric or behavorial disorder which can be fixed with talk therapy, as would any patient suffering from any organic disease process. Why this would be such a mystery to the presenter is beyond me.
The issue is this- take two distinct illnesses, anorexia nervosa and cancer, both of which are characterized by weight loss. Then create a waffling name such as ‘Chronic Weightloss Syndrome’, or ‘CWS’, and allow individuals such as Prof. Wessely and his colleagues to pollute the ‘CWS’ research literature with studies characterized by all manner of vague inclusion criteria and questionable methodologies which end up showing whatever it is the authors designed them to show. Then trumpet these false studies in uncritical and biased medical journals such as the BMJ instead of rigourous and well done studies on well defined patient groups.
What you end up with is a complete mess, which is where CFS is now. You have some people with an organic disease process who need biomedical treatments being confused with others who simply have a behavorial disorder which can be managed through behavorial interventions, with basically the entire medical establishment sucking at the teat of this ignorant cow of a theory.
As much as Prof. Wessely would like it to be, CFS is not and never was simply a new name for ‘neurasthenia’, anxiety disorders, etc. CFS is a chronic and disabling organic disease process which needs adequate biomedical research along with an objective eye cast on spurious, intellectually dishonest, unproven and unprovable psychobabble promoted by Prof. Wessely and his contemptible coterie.
John
March 9th, 2010 at 7:51 am
There are always two sides of the story. Prof. Wessely’s concept of CFS is quite different from mine. I see it as a dustbin diagnosis and differentiate between ME and CFS. To equate the two is based on an untested assumption. ME can occur in epidemic form and presents more like a neurological illness (.e.g muscle weakness, blurred vision, loss of fine motor coordination, not just ‘fatigue’). Knowledge of the epidemics means that the new virus is an unlikely candidate as trigger (incubation time, spread etc).
Prof. Wessely is probably right in that the aetiology of CFS is probably multifactorial. Given the heterogeneity of the population, it has to be. So some subsets may be the result of a persistent virus (e.g. Chia and Chia 2008)while others reflect nutritional deficiencies (especially vitamin D), sensitivities, chronic stress (which also undermiens the immune system), etc. Re depression, one source is not being believed. Hence the theory that any virus has gone (when?) and that the syndrome is perpetuated by psychological factors such as stress and inactivity. As a psychologist, I’m not sure that the appropriate response in such cases is CBT as decribed in the medical literature on CFS. More knowledge of the illness amongst physicians might be more helpful. And open minds. We can be more pragmatic than Prof. Wessely suggested.
I’m totally opposed to GET. It’s not appropriate and safe for everyone with CFS. Pacing is a helpful alternative.
The Lombardi study will be difficult to replicate given the lack of information on sample characteristics. One solution might be to study patients with an acute, post-infectious onset and to follow them for a year. To include a significant proportion of people whose fatigue can be attributed to chronic stress seems like a waste of resources. Stratification of samples is essential. Lumping everyone with chronic fatigue under one label to try and find the ’cause’ is like looking for a needle in a rather large haystack. Which is what the recent virus studies from Europe have been doing.
Dr Ellen Goudsmit
March 9th, 2010 at 11:52 am
I think John has summed up the problem brilliantly. Just to point out an error in what Prof Wessely said is that the researchers in Science never claimed XMRV is the cause of ME - just that it’s possibly associated with it.
Oh and we don’t need 100 years to laugh at Prof Wessely and his “treatments” - we are doing that already.
Andrew
March 9th, 2010 at 12:26 pm
John hits the core issue right on the head. The “Wessely School” came up with and use the patently flawed “Oxford 1991″ definition of “CFS”, which is merely idiopathic chronic fatigue, i.e. nothing more than chronic tiredness not caused by a known disease.1 This is a transparent attempt to create confusion and doubt by lumping all unknown causes of fatigue into “CFS” rather than defining ME/CFIDS as the unique neuro-endocrine immune disease it is. This Oxford definition is used by the Wessely School, including the Dutch researchers in this issue of BMJ, to produce meaningless results so they can say ‘let’s just reat them with CBT and GET (graded exercise).”
A hallmark of ME/CFIDS is Post-Exertional Morbidity- the worsening of the disease upon minimal exertion. Despite his disavowal here, the Wessely School CBT/GET treatment is: telling patients they do not have an organic disease, that exercise has been proven to only help, not harm them and then making patients exercise. This results in a tremendous amount of iatrogenic physcial morbidity.2 Unlike the Oxford definition, the Canadian Government ME/CFS Definition created by consesus of many of the world’s top ME/CFIDS clinicians and researchers, deliniates and explains the (considerable known) pathophysiolgy of this discrete disease.3
Wessely says that even were XMRV found to be the cause of ME, the exclusive treatment would remain CBT/GET. Well, is the treatment for AIDS still to tell patients they don’t have illness other than symptoms caused by the stress of being gay and they just need to exercise? History has shown that finding a retroviral cause and treating with anti-retrovirals significantly reduces patients’ illness burden even more than Wessely’s therapy of telling a patient he is not really sick.
1. Sharpe MC, Archard LC, Banatvala JE, et al. (February 1991). “A report–chronic fatigue syndrome: guidelines for research”. J R Soc Med 84 (2): 118–21. PMID 1999813.
2. Neuro Endocrinology Letters, Sep 15, 2009;30(3):284-299. PMID: 19855350, by Twisk FN, Maes M. ME-de-patienten Foundation, Limmen, The Netherlands; Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium.
3. http://www.mefmaction.net/documents/me_overview.pdf
Justin Reilly
March 9th, 2010 at 7:00 pm
I note Dr Wesselly,s subtle change in position from XMRV is not the cause of ME/CFS to IF it is found to be the cause.
According to Dr Wesselly,s logic then GET and CBT will be the treatment of choice for all people suffering from viral infections.I,m sure that AIDS patients would appreciate this.
Perhaps this viewpoint is what comes when a psychiatrist becomes involved in virology.A field he knows next to nothing about.
He also appears to have trouble in interpreting “trial” results GET and CBT have never produced any positive objectively measured improvements
I doubt that Dr Wesselly would except patient self reporting as sole and adequate evidence for the efficacy
of a drug.perhaps he would care to comment on that.He ,however,appears to embrace such data regarding CBT and GET with enthusiam bordering on the messianic.
One has to question whether a person with his preconceptions
re psychological causation has any useful part to play in biomedical research
g j morris
March 10th, 2010 at 9:25 am
Personally, I expect a higher level of professionalism from the BMJ
Prof. Wessely appears to have conveniently shifted his argument (compared to previous pronouncements) in response to recent developments and your interviewer let him get away with it! Perhaps a more thorough approach to research /preparation prior to conducting such interviews is needed in future.
Furthermore, your presenters failed in their duty to ensure fair representation of the facts insofar as the Lombardi study has never claimed a causative link between XMRV and CFS/ME.
Paul
March 10th, 2010 at 4:38 pm
John, I concur, you are spot on. The slimy psychiatrists and psychologists are now twisting like slippery eels. Once “it was all in our heads”, now it’s a real illness but we just need to be “rehabilitated.” And don’t they like to say “real” in such a contrite way.
I’m sorry you have to know what the illness is to treat it. No amount of rehabilitation would help TB, you need to identify the organism to find the cure. Similarly, highly active antiretroviral therapy, or HAART, has nothing to do with AIDS survival does it. Silly me, perhaps the £4 billion a year spent by the USA alone on AIDS research is all a mistake. Quick BMJ you better tell them its about rehabilitation before they waste any more money.
Now since you twisted psychiatrists like your car crash analogies so much here is one that is slightly more accurate. ME is like someone that has been in a car that goes over a cliff, bursts into flames on the way down and is sitting at the bottom in a crumpled heap. The person inside needs 20 operations to put their body back together and years of skin grafts, but your idea is not to bother with all that medical treatment and instead skip straight to forcing them to rehabilitation and physio. The illness needs treating first, rehabilitation is after.
A complete failure to find this new virus XMRV is just that, a complete failure. I await further results from reputable medical journals such as Science! Does anyone else notice how staged this pod cast seems, its almost as if they scripted it.
Michael
March 11th, 2010 at 9:54 pm
Why does the BMJ persist in using the term ‘chronic fatigue syndrome’ when the WHO uses myalgic encephalomyelitis (ICD10-93.3)?
When will the BMJ look at and question the links between Simon Wessely and the insurance industry?
When will the BMJ look at who benefits from this deliberate obfuscation of myalgic encephalomyelitis and ‘chronic fatigue’?
The BMJ is making me feel decidedly unwell!
Nicola Karen Reiss
March 12th, 2010 at 8:25 am
I would like to thank the BMJ for the chance to listen to a balanced, insightful and educative podcast on the subject of Chronic Fatigue Syndrome. I was hoping it would be a video cast so was a little disappointed to discover I was only hearing voices.
I am not a virologist but as an art historian I found the views expresssed on ME to be informative, well researched and very well expressed. The discussion on the role of doctors in torturing Danish asylum seekers was also interesting, an area I knew very little about.
From personal experience I know just how effective CBT/GET can be. My grandmother terminated a course of chemotherapy to allow her to spend more time with her family and undertake a short course of graded exercise therapy(graded activity due to her age)It is clear from the many detailed diaries she was required to keep that her last few weeks were among the happiest in her life.
I think Chronic Fatigue Syndrome is a bit like snake-bite. When a person gets bitten by a snake there is no need to know exactly what type of snake bit them. The important thing is to start rehabilitation straight away, keep the patient calm and stop them going on about it all the time which can only make the symptoms worse.
I have learned a lot from this programme and look forward to the subject being covered again in the future.
Alison-Heyho Parks
March 12th, 2010 at 2:56 pm
>>I think Chronic Fatigue Syndrome is a bit like snake-bite. When a person gets bitten by a snake there is no need to know exactly what type of snake bit them.
Well actually there is if you need a specific anti-venom, each one is specific for each snake venom. So I completely agree a very good analogy. ME is exactly like a snake bite and you need to know the exact snake to receive the correct treatment otherwise the person suffers more harm than good.
ME is an active disease process, therefore it has nothing in common with chemotherapy which is a singular harmful event which then requires recovery and rehabilitation.
Your analogies are as flawed as the rehabiltation arguments used by the psychiatrists.
Michael
March 12th, 2010 at 6:56 pm
Putting aside how strongly or weakly XMRV is associated with ME/CFS what would Wessley and medics who agree with his views say to a patient who clinically looks very unwell despite maintaing activity (so deconditioning can’t be used as a “trump card”), has severe orthostatic intolerance and POTS (and no deconditioning to blame that on remember?!) regular night sweats with pyrexia, malaise/fatigue,flu-like and in pain yet all medical tests are “normal” but the paitent is positive for XMRV (and remember that all human retroviruses thus far have been associated with severe disease, even caustive in the case of AIDS)
Do they really think CBT is going to return this paitent to health and work? What “false illness beliefs” and “misattribition” specifically would cause pyrexia. In my 15 year in medicine I can’t think of any.
Patients as described above really do exist and are in need of medical help. Talking therapies are an insult to these patients.
Wessely and his followers have to accept that the patinets they describe are not true ME patients. The patients he describes have a “Psychiatric” fatigue state for want of a better way of putting it and yes, these people will indeed be helped by CBT and GET.
People with ME won’t and its about time the arrogance stoped and medics accept that fact
Andrew
March 19th, 2010 at 1:27 pm