BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

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Firstly, this is a not a free speech issue, imo. This is a public/patient safety issue. For example, would we consider it simply a personal issue, and therefore not a work disciplinary measure, if a pair of teachers published a commentary that was extremely hostile and insulting to, and showing a complete lack of understanding of the children in their care? Should we not be concerned if a pair of oncologists wrote in BMJ RR that their cancer patients were whining fakers who didn't need or deserve chemotherapy, radiotherapy, or surgery?
There certainly is a free speech issue in the context of the NHS. It's a straw man argument to use terms such as 'whining fakers', because no matter how inept they may have been Collings and Newton did not use insults - and their likely argument is that they were advancing a reasoned academic argument. The NHS is in part a research organisation, in that context its staff must have academic freedom to discuss and present ideas openly, and as NHS employees to be defended from inappropriate attacks in the same way that any UK employee should expect protection at work.

The NHS is also a public body where it is vital that where known problems are not being properly addressed, that staff must be free to speak out, and therefore the capacity of management to inhibit staff from public communication must necessarily be limited.

The issue in the case of Collings and Newton (or potentially just one of them) is (it appears) that they failed to appreciate that their hypotheses would cause upset to patients, and that they (or at least Newton) used their institution's name without seeking any permissions, as validation of their views. Had they gone to the management and sought agreement on what was to be published, it is very likely the absurdity of their hypotheses and the inevitable offence caused would have been pointed out to them and permissions witheld.

From the NHS perspective, in general the view would likely be that this is a case of severe nonclinical misjudgement and a failure to follow approriate protocols on publishing and using the employing institution's name. The NHS would be unlikely to want to see a loss of highly trained staff in such circumstances and sanctions far short of sacking would be expected. In some circumstances, it's always possible that a disciplinary action is seen a useful way of moving someone on, but staffing reperesentatives would be very resistant to someone being sacked for expression of a professional opinion even if it was ineptly delivered.
 

Firestormm

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Yeah I am afraid that's probably likely. And I think Collings is beyond retirement age anyway - if memory serves. I suppose Newton might find his contract isn't renewed... I guess we'll have to wait and see.

It is a shame that - by all accounts - Essex does not have a prominent patient charity/support group capable of gaining a toe-hold in this debate and getting in the door. It would perhaps present a good opportunity to gain patient input into the management of the service and with it's overall operation.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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An additional RR has been published, today:

http://www.bmj.com/content/329/7472/928/rr/703612


Joanna Lane, retired
Coulsdon

Re: What causes chronic fatigue syndrome?

26 June 2014

Some time has elapsed since this editorial was written, and it may be relevant now to point out that 30,000 cases of post-traumatic hypopituitarism are missed each year, and many of them are misdiagnosed with chronic fatigue syndrome http://dailym.ai/1gWRisu The incidence of PTHP is between 30 and 50 per 100,000 so the prevalence in the UK may, after decades of neglect, be around a million. If these people were removed from the CFS equation we might well see the prevalence of ME/CFS/fibromyalgia reduced by a third. Several hypopituitarism patients who have experienced an ME misdiagnosis have written to the BMJ and their stories may be found on these links:
http://www.bmj.com/content/346/bmj.f1988?tab=responses
http://www.bmj.com/content/347/bmj.f4572/rr/657462
http://www.bmj.com/content/346/bmj.f894/rr/643479

References
Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA

Fernandez-Rodriguez E et al, Hypopituitarism following traumatic brain injury: determining factors for diagnosis, Front Endocrinol 25 August 2011 doi: 10.3389/fendo.2011.00025

Competing interests: None declared
 
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ME, CFS etc as discrete entities are indeed constructs/memes. That is not the same as saying the illness and underlying disease that the patient has is due to a meme, but this physician does seem to be flirting with the idea that it is a contributor.

I would prefer he actually propose a hypothesis rather than simply claiming that it matches the pattern of a meme.
 
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I think it is a tautology, all disease labels can be considered memes. A finger pointing to the moon is not the moon itself.

Lastly, while it could be argued that being Asian is protective, it would be a LOSING argument based on the population based studies by Japanese and Korean researchers who have actually found higher levels of both chronic fatigue and chronic fatigue syndrome than in, say the USA.
 
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Valentijn

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Lastly, while it could be argued that being Asian is protective, it would be a LOSING argument based on the population based studies by Japanese and Korean researchers who have actually found higher levels of both chronic fatigue and chronic fatigue syndrome than in, say the USA.
Surely you don't expect the psychobabblers to read real research?!? :jaw-drop:
 

chipmunk1

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Lastly, while it could be argued that being Asian is protective, it would be a LOSING argument based on the population based studies by Japanese and Korean researchers who have actually found higher levels of both chronic fatigue and chronic fatigue syndrome than in, say the USA.
Surely you don't expect the psychobabblers to read real research?!? :jaw-drop:
Hahaha. You can find correlations all the time. Just pick the ones that you like and imply causality.

So the meme theory is based on some academic theories and speculation without any real world application and to support the argument you take some false correlations and imply causality.

And In the end it's all about blaming the patient. Pure coincidence of course.
 
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alex3619

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Cherry picking associations and claiming causality is one of the contributing factors to why its currently estimated that half of the psych research is wrong. People go fishing for association, then fit that to their explanations. Sometimes they do data mining after the experiment is over to come up with new associations.

Its why these things need to be tested, not just supported. Its part of why critical rationalism supplanted logical positivism.

Its fine though to propose an association might indicate causation, as a research question. You then test it.
 

chipmunk1

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Cherry picking associations and claiming causality is one of the contributing factors to why its currently estimated that half of the psych research is wrong.
most likely the embarrassing findings(they cannot prove they are right) never get published.
 
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It is a shame that - by all accounts - Essex does not have a prominent patient charity/support group capable of gaining a toe-hold in this debate and getting in the door. It would perhaps present a good opportunity to gain patient input into the management of the service and with it's overall operation.
The MEA lists several groups: http://www.meassociation.org.uk/2009/09/essex/ though of course their members and supporters may be heavily overburdened already. I'm not sure what the right way to alert those groups, if they are not already aware, of the existience of this discussion. Perhaps an 'invite' from PR mods ?

Sonya Choudry is clearly keeping an active watch on the situation and there's no reason why following the internal enquiry, the service managers shouldn't themselves reach out to local ME groups and seek active patient participation in shaping the future of the service. The NHS is after all supposed to be committed to increasing patient involvement.
 

Sushi

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My favorite is the correlation between pirates and global warming. As pirates have decreased, global warming has increased. Ergo, we need more pirates.

It's doctrine in the Church of the Spaghetti Monster :D
Now here's a career thought we should consider: lazing around the Caribbean on a "scary" pirate ship, doing nothing--it many only be the number of pirates (and ships) that is the operational factor, not the pirating itself :rofl:.
 

Forbin

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As far as the article in the BMJ on CFS being a meme is concerned...

As Wolfgang Pauli once said about a physics paper - it's not only not right, "it's not even wrong."
 
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Esther12

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A bit OT, but I was just reading a presentation from Alice Green and I thought it might be of some interest here as she did it as the "Highly Specialist Counselling Psychologist" for the Essex CFS Team (EDIT: as mentioned below, an Essex CFS team based at a different place, and I'm not sure how they connect - I said it was a bit OT). I don't know when it's from, but would guess it's at least a few years old:

html: http://webcache.googleusercontent.com/search?q=cache:T9UkxIvkfeYJ:www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Alice%20Green%20Presentation.ppt &cd=2&hl=en&ct

powerpoint: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Alice Green Presentation.ppt

It had things like:

CFS/ME patients underestimate their activity levels and overestimate their symptoms (Fry & Martin, 1996)
I jhad ust posted about a paper that misrepresented that Fry and Martin paper here: http://forums.phoenixrising.me/inde...atigue-syndrome-knoop-2010.30759/#post-470760

There's more discussion of the paper from here: http://forums.phoenixrising.me/inde...tations-of-their-childs-iq.22629/#post-388753

It's very difficult to see that Fry paper as showing anything much, as the actometers they used seemed to have different views to both CFS patients and healthy controls as to what was counted as being active:

Table I.- Mean (SD) measures of activity (percentage of active
epochs), averaged over three days

CFS: Actometer 68.2% (8.0) of the day active. Child estimated: 38.6% (16.6) Parent estimated: 34.4 (16.1)
Healthy: Actometer 77.1% (9.7) of the day active. Child estimated: 56.4% (17.6) Parent estimated: 56.5 (10.1)
I also don't see how she could see that paper as showing that patients overestimate their symptoms.

Not that the poor evidence showing this claim to be true should stop Alice Green's fun speculations on the cause:

Could be due to patients’ very high expectations of themselves?

CFS/ME patients set themselves very high standards to uphold, therefore, may underestimate own activity and overestimate symptom levels

Attribution of CFS/ME to external factors may help protect patients from feelings of depression and sense of failure?
Also, all of these psychosocial factors would seem likely to correlate with illness severity anyway (I'm not sure what was meant by 'lack of understanding of their illness' though, especially given everyone's poor understanding of PVFS):

Spence & Moss-Morris (in press) – Prospective study
Patients with glandular fever who have:
Lack of understanding of their illness
Highly distressed due to illness
Low perceived control over their illness
are more likely to go on to develop CFS/ME
Just another couple of bits:

Apparently it's important that we agree with her:

In order to help patients work towards recovery in CFS/ME there needs to be a shared understanding between client and practitioner of the underlying psychological factors maintaining CFS/ME
I'm not sure how normalising this attribution would really be for most patients:

Normalising attribution e.g. Symptoms due to change in lifestyle, behaviour, environment etc.
 
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A bit OT, but I was just reading a presentation from Alice Green and I thought it might be of some interest here as she did if as the "Highly Specialist Counselling Psychologist" for the Essex CFS Team. I don't know when it's from, but would guess it's at least a few years old:
Green is now in private practice: http://uk.linkedin.com/pub/dr-alice-green/1b/b7b/814 where the date given for her Essex Centre employment is 2005 -2007 but note this was not the Southend based service but part of the Barking, Havering & Redbridge NHS Hospitals Trust, the current CFS service for which is: http://www.bhrhospitals.nhs.uk/copy_of_our-services/chronic-fatigue-outpatient-service.htm

Still Green's document, which is available for download at: http://www.docstoc.com/docs/83590054/Cognitive-Behavioural-Therapy-in-Chronic-Fatigue-Syndrome , is particularly horrible. The need to 'agree' with the therapist of course was highlighted in the failure of the FINE trial addon to PACE.
 

Roy S

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From the comment from 2004 by Derek Enlander M.D.
 
"Now to the real point I wish to make. Whether we accept the notion that this is a physical disease or not, even though Wessely et al made a career of denying the facts. The problem of determining patient improvement or relapse is ultimate."
http://www.bmj.com/rapid-response/2011/10/30/progress-determination-me-cfs
 
There is a long history of this bizarre concept of ME/CFS being spread by words. A Google search of "Elaine Showalter Simon Wessely" found these.
 
http://www.cfids-me.org/marys/elaine.html
A review of Elaine Showalter's _Hystories: Hysterical Epidemics and Modern Media: Alien abduction, Chronic fatigue syndrome, Satanic ritual abuse, Recovered memory, Gulf War syndrome, Multiple Personality Syndrome_ (NY: Columbia University Press, 1997)
 
"All this would be sufficiently dispiriting, but Showalter pressed her thesis one step further. The patient who believes he or she has CFS is not merely self-deceiving: we are all Typhoid Mary's, innocently spreading the tragedy and pain of our hysterical disease among the populace with every word we speak. The support groups, self-help books, and Internet discussion groups where we have sought comfort are infected with our delusions, and hence have the power to infect others. Even the physicians who treat us only harm the large populace with their well-meaning but false comfort. Their "kindly, tolerant, and temporizing views do not address the ways that psychogenic epidemics escalate," she writes (p. 131). The only solution is a type of Tough Love: physicians should turn CFS sufferers away and force them to face the fact (according to her) that psychoanalysis is the only answer to their problems. To stop this "epidemic," to halt the trail of "infection," she would silence us -- and our physicians (pp. 12-13, 131). What a frightening sentiment to emerge from the heights of the Anglo- American scholarly community! "
 
The review should be read for better understanding of what Mary means in context by "... frequent references to Showalter's London mentor, psychiatrist Simon Wessely". The fact that CFS and Gulf War Syndrome are Wessely's focuses are obvious. Showalter was widely criticized, especially by the ME/CFS community, and then very publicly and effectively played the victim like Wessely so often does.
 
Ellen Goudsmit also wrote a critical review of Showalter's book.
http://freespace.virgin.net/david.axford/bookrev2.htm
 
 
The search also produced some associations and 'colorful' characterizations of Wessely here:
http://www.davidicke.com/forum/showthread.php?t=177856&page=3
 
 
And Simon continues to play the victim "... since it was impossible to get rid of the stigma of being a psychiatrist..."
http://www.meassociation.org.uk/201...-fatigue-syndrome-journal-article-march-2012/
 
 
 
 
 
 
 
 
 
 

chipmunk1

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The only solution is a type of Tough Love: physicians should turn CFS sufferers away and force them to face the fact (according to her) that psychoanalysis is the only answer to their problem
Psychoanalysis has been disproved since 1903 or so.

I doubt that it is the answer to anything.