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

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Tom Kindlon

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Susanna Agardy submitted this four days ago to the BMJ, but it hasn't gone up, so she has started posting it around:


Response to ‘Is chronic Fatigue Syndrome a meme?’

Susanna Agardy


Below is a rapid response I have submitted to the BMJ which has not been published. It is a response to another rapid response ‘Is chronic Fatigue Syndrome a meme?’ by Anthony D Collings Consultant Physician and David Newton to an Editorial by Peter D White titled ‘What causes chronic fatigue syndrome?’

http://www.bmj.com/content/329/7472/928/rapid-responses Both articles were published in 2004 and have been resurrected. I would be interested to know what instigated this resurrection.


The authors comment on a definition of a meme : ‘Dawkins used the term particularly in relation to religious beliefs and defined it as an idea or group of ideas which propagate between individuals and which share many of the characteristics of life, including the abilities of propagation and self defence, and the capacity to evolve.’


My response:


Rigorous reasoning is missing from ‘meme’ idea


The piece, ‘Is Chronic Fatigue Syndrome a meme?’ is replete with errors of reasoning and interpretation in the claims made by Doctors Collings and Newton. The authors seem to accept their invention of ‘CFS’ as a meme as fact. This perspective then leads them to attribute perverse motives to people with CFS which justify their bias. Behaviours and attitudes of these patients which would be considered normal in other people are portrayed as irrational and pathological.


The authors claim that ‘It is generally accepted that membership of a CFS peer group is a predictor of poor outcome of treatment, and it has been argued that this may be due to negativity within the groups as to diagnosis, treatment and prognosis.’


They resort to the use of rhetorical devices like it is ‘generally accepted’ and ‘it has been argued’: ‘accepted’ and ‘generally argued’ by whom? Perhaps these terms are being used to disguise the fact that the conventional caution relating to statements about causality is being thrown to the wind here.


The claim that peer group attendance results in poor outcomes is nothing more than a favoured interpretation by those who confuse antecedent and consequent. If it is true that patients who join support have worse outcomes, has it occurred to the proponents that patients who join groups may be those who are not getting better to begin with? That those who get better are likely to leave the group because they no longer need it? There are also patients who never join a group in the first place and still don’t get better.


It appears the authors would seek to deprive people with CFS of support and this deprivation is expected to allow them to get better. Would the authors make the same claim about, say, a breast-cancer or AIDS support group?


The authors would also seek to discourage use of the internet by patients. Why are they concerned about patients informing themselves of ideas that compete with their own invented version of CFS as meme?


In suggesting that a meme, among other psychosocial factors, is likely to be the cause of CFS, again, the authors ignore the sequence of events in CFS (including ME). They seem to be unaware that most people with these conditions suffer from symptoms with sudden or gradual onset often for years before they even hear of these terms, let alone seeking out this diagnosis on the internet. Such confusion about cause and effect in medical practitioners bodes badly for their treatment of the condition.


‘There is a large group of sufferers who vociferously deny the possibility of a psychosocial cause for their symptoms,…’ Of course they do! They are sick and disabled and this attributed ‘cause’ offers no explanation and no help. On the contrary, this diagnosis has caused patients a great deal of medical abuse. The current medical model does not accommodate CFS and ME and confusingly drags in the default evidence-free psychosocial diagnosis.


If their proposed treatment, CBT/GET, worked, patients would be flocking to it. As it is, the required magical thinking required in these treatments that, ‘if I pretend my illness doesn’t exist it will go away’, is being wrongly applied and has failed.


It is extraordinary that scientifically trained people find it easier to adopt a belief in an invention with no objective evidence than to believe scientifically demonstrated evidence of serious biomedical problems in ‘CFS’. They could also ask patients about the realities of CFS and ME.


Essex CFS/ME Service has apologised for this ‘hypothetical deliberation’. http://www.meassociation.org.uk/2014/06/essex-cfs-service-apologise-for-letter-to-the-bmj-naive-of-authors-not-to-consider-wider-implications-20-june-2014/

It would be appropriate for the authors to apologise for this harmful piece of speculation. It adds nothing to knowledge about CFS or ME. Rather, it promotes ignorance, to the detriment of patients with these conditions.
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chipmunk1

chipmunk1

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If their proposed treatment, CBT/GET, worked, patients would be flocking to it
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[satire]
No they hate it so much because it works so well and since they don't want to get better it is the worst that can happen to them.:bang-head:
[satire]
 
R

Roy S

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Wikipedia has a page on memes with this section of criticisms. One critic calls it pseudoscientific dogma.
　
http://en.wikipedia.org/wiki/Meme#Criticism_of_meme_theory

A more colorful terminology for this example might be:
http://en.wiktionary.org/wiki/mental_masturbation
　
The question remains why this is being done now. Suzy Chapman's speculation earlier in this thread seems quite possible because it does follow the pattern of closely following publicized biological findings in myalgic encephalomyelitis. There is an ad currently playing about distraction being the oldest trick in the book:
http://www.marketmenot.com/geico-oldest-trick-in-the-book-commercial/

The Wikipedia page on psychological manipulation has many tricks listed, but the last time I read it it was missing the effective trick of antagonizing the victim and then blaming the victim for reacting.
http://en.wikipedia.org/wiki/Psychological_manipulation
　
　
　
　
　
　
　
　
 
B

Bob

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Firestormm said:
If I understand this notion of 'memes' (and I don't pretend to understand it very well), then it would also apply to doctors. The way I see it - and it's all philosophical so has no relevance at all in the medical domain in my view - then doctors would 'latch on' to CFS and apply the label to patients before properly trying to understand and diagnose what was wrong with them. So, whilst many of the critiques above are I think valid - we can also perhaps lend this same theory to doctors and one might then use it to 'explain' why it is that patients are arbitrarily assigned this umbrella... It could go even further and be used to help try and explain why things that might previously have been put down to other factors become assigned to ill-health and CFS. Things that have no right doing so... How often do we complain that 'chronic fatigue' has become wrongly a part of 'ME'? Or that in media reports only 'fatigue' is shown as the problem? If anything I would say that 'fatigue' has become a meme...
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I totally agree with you. Collins and Newton should have applied the term to themselves, and their ignorance, rather than to their patients!
 
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B

Bob

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Nielk said:
Eleven years ago, I was at the height of my career. I was an active member of my community and took care of my family and household.

One day, I decide that I had enough of this rewarding life. I wanted a change. I started searching on the internet for some strange obscure illnesses. I considered various different options but, finally settled on the much desired chronic fatigue syndrome.

It seemed like a perfect fit for me. I loved being ridiculed, and I was particularly seeking to become very isolated from all people that I loved in my life.

I made sure to memorize all the critical symptoms in order to hopefully qualify for a diagnosis. I searched for a cfs specialist in my area and came to him with all my "new symptoms". I felt really excited when I finally received an official diagnosis.

Since then, my life has improved so much that I have kept insisting all this time that this is what I suffer from in order to remain in this much desired state of having this disease. I love my life now as it is. I love the way doctors and people in general look at me.

The best part is the fact that my family have lost a functioning mother/wife. I can't describe how rewarding this feels and this is why I am so satisfied in this state and will keep on insisting that I have this disease no matter what.
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I'd love to see this posted on BMJ.
 
Leopardtail

Leopardtail

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Nielk said:
Eleven years ago, I was at the height of my career. I was an active member of my community and took care of my family and household.

One day, I decide that I had enough of this rewarding life. I wanted a change. I started searching on the internet for some strange obscure illnesses. I considered various different options but, finally settled on the much desired chronic fatigue syndrome.

It seemed like a perfect fit for me. I loved being ridiculed, and I was particularly seeking to become very isolated from all people that I loved in my life.

I made sure to memorize all the critical symptoms in order to hopefully qualify for a diagnosis. I searched for a cfs specialist in my area and came to him with all my "new symptoms". I felt really excited when I finally received an official diagnosis.

Since then, my life has improved so much that I have kept insisting all this time that this is what I suffer from in order to remain in this much desired state of having this disease. I love my life now as it is. I love the way doctors and people in general look at me.

The best part is the fact that my family have lost a functioning mother/wife. I can't describe how rewarding this feels and this is why I am so satisfied in this state and will keep on insisting that I have this disease no matter what.
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The sarcasm is so hard to resist. but the argument just is that stupid....
 
Leopardtail

Leopardtail

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Chinese Whispers made to sound 'Intellectual'

I find this whole topic of the 'Meme' to be not much more than the concept of Chinese Whispers having been overly intellectualised and turned into a book. All it actually describes is a non-factual statement/idea passed on as fact and then perceived to be fact by all who receive it - thus it becomes perceived as a real fact in time. They describe this as 'reproduction' when it is nothing more than transmission. They further describe the idea becoming corrupted or embellished as per Chinese Whispers.

There is no aspect of the meme theory that I have been able to find allowing for physical manifestation of a belief. That could only be the case for a true invention - that would not fit the definition of a meme, it must be untrue to be a meme.

The most obvious issue though with respect to CFS is that mitochondria do not participate in 'intelligent thought', nor that I am aware of can by thryoid gland read the internet, or my immune system listen to radio. (sarcasm) It's a complete mystery to me how my various organs became ware of this meme when my conscious mind had never come across this weird destructive 'cfs meme' (end sarcasm).

What is very clearly evidence for meme-tic thought is this ridiculous obsession with psychosocial twaddle about a physical disease and the hero worship of the perpetrators of this villainy. While the concept of a 'Meme' can clearly exist (propaganda depends upon it) it's application to a physical and concrete disease reflects either very low intelligence or an extremely poor understanding of the concept.
 
alex3619

alex3619

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A meme is simply an idea about ideas. Its not something concrete. Its something that has some explanatory value, but its always hypothetical. Its a way of talking about beliefs. It is, sadly, also only a belief/concept/idea.
 
S

Sean

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It is almost a cliche now, but as Richard Feynman put it about theory:

If it disagrees with experiment, it is wrong.

Experimental data is ultimately supreme. Which is why certain folk don't want the rest of us to see it, or even want it produced in the first place. Tends to expose the idiots, spivs, and thugs.
 
S

Sean

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What part of psychobabble is concrete?
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None.

I wasn't specifically thinking about psych. Was making a more general point about reasoning getting too removed from direct hard evidence. Applies right across science, medicine, and our whole lives.
 
Firestormm

Firestormm

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6 July 2014
Response to Dr Susan Blackmore from Dr Ellen Goudsmit (Reitred Health Psychologist): http://www.bmj.com/content/329/7472/928/rr/759996
Response to Dr Blackmore

I appreciate Dr Blackmore's clarification of the concept of memes (30th June) but while I may be one of those described as 'aggressive', I was deeply frustrated as a psychologist to read the biased response by Collings and Newton. Being familiar with the literature on CFS, I could foresee that the latter would undermine the understanding of this illness and thus potentially harm patients.

I referred to the possible influence of boredom and prejudice for a reason. In my years as a health care professional, I have observed that most of the biased articles on CFS have come from people unaware of and not interested in the literature which undermines their position. It’s a lay approach, more often seen in New Age magazines, though sometimes it can be linked to politics. Authors pick and choose information to support their arguments. However, scientists have to be more objective.

For example, Collings and Newton rightly noted that CFS occurs in families but claimed there was no known cause. In fact, evidence suggests that the likeliest explanation for clusters is that those affected were all exposed to the same virus. Even pets in the family sometimes become ill.

I am personally not aware of a psychosocial theory of CFS which many patients apparently reject. At the moment, there are influential theories that can be referred to as biopsychosocial or cognitive-behavioural. Isn’t it possible that patients tend to dismiss these because they don’t come close to their experience-as-lived? Moreover, there is growing evidence of pathology to support their attitude.

I don't know the cause of CFS because I do not accept that as currently defined, it covers a single entity. In my view, this syndrome has many causes. Some subsets can be attributed to ongoing pathology, some to early childhood stress, some to depression and some to a lack of vitamin D. As things stand, you can't talk to a virus, nor to mitochondria. To increase activity when that makes you ill is not logical. It's like advising a smoker with lung cancer to gradually increase the number of cigarettes per day. That's why I proposed a strategy called pacing. It's safe and avoids deconditioning due to pre-emptive rest. Since I began to write about it in 1989, every survey in every country has rated pacing as one of the top three most helpful 'treatments' for CFS.

Collings and Newton also alluded to secondary (financial) gain. Surely, only a fool would try and obtain benefits using a contested illness.

In addition, they cited a reported correlation between membership of a support group and poor outcome. This doesn’t mean that the former resulted in the latter. A more likely explanation is that the most severely affected pay money to join a support group. If I recall, the study in question obtained the data on support groups and outcome at the same time point.

Finally, the term CFS might be new but the illness is not. It certainly predates the internet.

A few years ago when similar views were expressed, a group of medical experts offered to inject the sceptics with enterovirus, the pathogen most often associated with post-viral CFS. So far, the sceptics have been surprisingly reluctant to take up their offer. Why? If the illness is largely a product of the transmission of information, they will not become ill.

I have not cited references here but recommend the Purple booklet produced by the ME Association, which I consider the most authoritative publication on this illness available at this time. Those who are not bored or prejudiced will order and read it before writing their next response on the ‘psychosocial’ aspects of CFS.

I've written this response to show that my frustration was a reasonable reaction to the comments by Collings and Newton. Scientists are human. We are permitted to be emotional. but we can't just look away. We have a duty of care to challenge ideas which misrepresent an illness and the views of those who suffer from it. If Dr Blackmore considers this unhelpful, then I accept that. We shall agree to disagree.

E Goudsmit PhD FBPsS
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