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

Min

Guest
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1,387
Location
UK
Nasim Jafry has this rather brilliant RR posted on the BMJ site now:


Anthony Collings is a hoot, I am beside myself with mirth. What a prankster!

He couldn't possibly be serious, could he? Surely he is just pretending to mock people with ME? (Though why he would be motivated to do this is beyond me.)

Could he really be suggesting that when I was diagnosed with ME in 1984 by consultant neurologist Peter Behan at the Southern General in Glasgow, after 18 months of severe illness following Coxsackie virus, that it was down to a meme?

Surely not.

There was no internet, I had never heard of ME or Coxsackie. I was in no ME 'group'. I don't think there even were any in 1984.

The ludicrously inadequate CFS label had yet to be coined.

I had ME as defined by Dr Melvin Ramsay. I still have ME as defined by Dr Melvin Ramsay. And for the record I spent the first decade of my illness pushing myself to get better, only succeeding in getting worse.

I was a very ill, young woman, who went from straight 'A' undergraduate to bedbound, dreadfully unlucky to have picked up this enterovirus and not recover.

Also, I am half Asian, and can confirm that the statement below is frankly nonsense.

''Conversely, it has been suggested that being Asian (groups, arguably, whose distinctive cultural identities might well form barriers to memes) is a protective factor against CFS (4)"

I have a horrible feeling that Anthony Collings is not joking. I suggest he needs to educate himself. Sadly, he probably, won't.
 

chipmunk1

Senior Member
Messages
765
the autor of the BMJ commentary cited this book:

http://www.zompist.com/memes.html

The new pseudoscience of memes
A review of Thought Contagion by Aaron Lynch
I snapped this book up as soon as I saw it. I love the idea of memes, which Richard Dawkins introduced in The Selfish Gene, and which Lynch says he independently invented. And who wouldn't? The notion that ideas can reproduce-- like genes-- not for our benefit but for theirs is simultaneously chilling and fascinating, and I was eager to see what twenty years of thought on the subject had produced

Very little, it turns out. Lynch's book is deeply disappointing; what memetics has chiefly generated is a new way to blather about society, sex, and politics, without rigor and without the slightest need to make sense.

Lynch worries a bit in the introduction about this reaction; he pleads for a little patience-- he wants to show what sort of exciting ideas memetics can come up with, not get bogged down in factual nitpicking.

What he doesn't see is that the real problem is not just that he gets facts wrong. It's that he's developed memetics into a scheme for generating factless scenarios. By excluding rigorous analysis, testing, and verification from his methodology, he's simply refined an ability to tell just-so stories about social behaviors.

Generally you can take Lynch's stories, and with further analysis come to completely opposite conclusions. What this should tell us is that this sort of memetics has no value at all, except to reinforce our prejudices with what sounds like science.

I'll give some examples-- many, many examples-- and then offer some thoughts on why memetics has caught on despite its essential vacuousness.

The concept itself seems to be quite controversial and mostly speculation.

http://en.wikipedia.org/wiki/Memetics
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
The latest RR:

Neil C. Abbot, Research & Operations Director, ME Research UK

There’s a problem with the “meme theory of CFS” proposed by Collings & Newton of the Essex CFS Service in their recent response. Memes are ideas or groups of ideas; they have no independent existence outside of human minds. The things of the world, however, are not memes, and it is dangerous to assume otherwise.

Leprosy, for example, could not be called a meme – it is an infectious illness with established sequelae, and it would exist as a fact of the world whether anyone ever ‘conceived’ of it or not. Similarly with ME/CFS. People meeting the definitions of ME/CFS and having the requisite concatenation of symptoms – delayed post-exertion problems, musculoskeletal pain, and a range of neurological & cognitive difficulties – certainly exist (there are around 190,000 of them in the UK [1]); their physiological illness is plain for anyone with eyes to see; and research frequently uncovers objectively existing biological abnormalities. Examples from ME Research UK-funded studies over the past 14 years [2] include dysfunction of the autonomic nervous system; impaired cardiac function, including reduced cardiac mass and blood volume; increased levels of oxidative stress, and increased apoptosis of white blood cells; the presence of cardiovascular risk factors with arterial stiffness; biochemical anomalies in children with ME/CFS mirroring those found in adults; and evidence of an increased sensitivity to pain.

Of course, it could be argued that the ‘concept’ of any particular illness – such as leprosy, ME/CFS or leukaemia – has meme potential, but the point is trivial and it tells us nothing about the real world of illness. No, ME/CFS is much more than a meme; it is very real, it should be taken as seriously as any other medical condition, and patients should be treated with respect.

References
1. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. Nacul LC, Lacerda EM, Pheby D, et al. BMC Med 2011 Jul 28; 9: 91.
2. £1 million of biomedical research: an overview. Breakthrough 2014; Issue 19 (Suppl). ME Research UK. Downloaded 20-6-2014 http://www.meresearch.org.uk/news/research-overview/
 

kermit frogsquire

Senior Member
Messages
125
Stephen E. Ralph, Retired Diagnostic Radiographer said:

I was subjected to a diagnosis of Chronic Fatigue Syndrome during 1996. This diagnosis effectively ended my career in diagnostic radiography.

During 2004 I met a GP who had a friend who had Behçet's disease. My GP decided that based on the evidence in my medical records, I needed a full reassessment of my condition.

Nine clinical referrals and four years later I was formally re-diagnosed as having Behçet's disease.

However, last year, my new rheumatologist decided to request some more blood tests to check my hormone levels and during February 2014 I was diagnosed with Hypogonaotropic Hypogonadism - a lifelong dysfunction of my Pituitary glad that was genetically inherited.

"Chronic Fatigue" is a major symptom of Behcet's disease and "chronic fatigue" is also a major symptom of pituitary disorders be they inherited or due to injury of the pituitary gland.

I now realise that those doctors who claim to be specialists in "chronic fatigue" are not specialists in all the possible causes of "chronic fatigue" that cover many clinical specialities from Rheumatology, Endocrinology and Neurology.

Having been made housebound and bedbound for eight excruciating years from my misdiagnosis of Chronic Fatigue Syndrome it is my view that there is sadly a great deal of ignorance within the medical profession that has been randomly condemning patients to suffer clinical misdiagnosis instead of clinical investigation.

http://tinyurl.com/mxms8g2

Perhaps the time is coming that the medical profession itself will have to take the blame for the mess that they have created covering more than two decades since the artificial construct of Chronic Fatigue Syndrome was introduced.

How can any specialist in "chronic fatigue" make an accurate differential diagnosis if they are not qualified or able to understand all the many pathological causes?

The above rapid response to "Is Chronic Fatigue Syndrome a Meme?" say it all in my opinion.

http://www.bmj.com/content/329/7472/928?tab=responses

There are people who want CFS/ME to be this or that, organic, psychological ... yet is it nothing but an artifical construct that is causing torture? Torture from psychiatrists (who inclidentally actually often refuse to diagnose the organically ill as having ME) and torture from "ME specialists" who diagnose everyone with it. Which is worse?
 

Min

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Messages
1,387
Location
UK
What can we as a group or individuals do about the contempt these doctors have shown to the patients they work with please?


To whom can formal complaints be addressed? Can anyone help with the wording of such a complaint?


It seems to me that if they had written this about any other neurological illness it would have been taken seriously, the official answer would not have been a form of 'it's OK because they didn't really mean what they wrote'.
 
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Messages
15,786
What can we as a group or individuals do about the contempt these doctors have shown to the patients they work with please?
Spread info advocating a complete boycott of the clinic, and maybe organize some picketing out in front?

Complaining to the clinic wouldn't help, since they're the problems. Would complaining to the hospital they're attached to have an impact?

Is there some way to get our outrage into the British media?
 
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Min

Guest
Messages
1,387
Location
UK
Spread info advocating a complete boycott of the clinic, and maybe organize some picketing out in front?

Complaining to the clinic wouldn't help, since they're the problems. Would complaining to the hospital they're attached to have an impact?

Is there some way to get our outrage into the British media?


Thank you, perhaps we could join forces and draft a complaint to the hospital that could also go to the health minister?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Facebook 22 June 2014: https://www.facebook.com/photo.php?...67.545018383&type=1&theater&notif_t=notify_me
487872_426483780730218_336885981_n.jpg


Much more than a meme!

155433_786371698074756_6396791099287377026_n.jpg


Website blog: bit.ly/1pZ7aTW

A meme is “an idea, behaviour or style that spreads from person to person within a culture.” Last week (June 18), there was a comment on the British Medical Journal’s website entitled “Is Chronic Fatigue Syndrome a meme?”

Amazingly, it proposed that the illness fits the model of a meme-mediated syndrome – a “dysfunctional culturally-transmitted idea-infection”!

Our ‘rapid response’ to this has now been published on the BMJ website bit.ly/T1TNnq. As we point out, memes are ideas or groups of ideas, but the things of the world (including illnesses like leprosy, ME/CFS or leukemia) are not memes, and it is dangerous to assume that they are.

After all, people with ME/CFS certainly exist (around 190,000 of them in the UK), their physiological illness is plain for anyone with eyes to see, and research frequently uncovers objectively existing biological abnormalities.

Picture credit: Wikipedia: Internet Memes (a subset of the general meme concept) bit.ly/1rnWjAI

From the website blog: bit.ly/1pZ7aTW
According to Richard Dawkins in his book The Selfish Gene, a meme is “an idea, behaviour or style that spreads from person to person within a culture.”

On 18th June 2014, a comment appeared on the website of the British Medical Journal entitled “Is Chronic Fatigue Syndrome a meme?

Authored by Dr Anthony Collings and Dr David Newton of the Essex CFS Service, it asked how well ‘chronic fatigue syndrome’ fits the model of a meme-mediated syndrome – a “dysfunctional culturally-transmitted idea-infection”.

The authors conclude that “characteristics of transmission and retention of CFS fit well the characteristics of meme transmission and retention described in the literature”. And they go on to say that “Present mainstream treatments for CFS make sense when viewed as a process of dememeing.”

ME Research UK has published a ‘rapid response’ to this comment on the BMJ website, and it is given in full below...

Extra spacing added by moi :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
10440987_10152441948818209_2845238862013349314_n.jpg

22 June 2014 Facebook: https://www.facebook.com/actionforme/posts/10152495460928209?notif_t=notify_me

Following our correspondance with Essex CFS service regarding comments made by its lead physician, we have received an email from Noreen Buckley, Head of Rehabilitation and Essex CFS Service manager.

She says: “The article you refer to has not been sanctioned by the Essex CFS/M.E. service and does not represent the views of the Essex CFS/M.E. service or Southend University Hospital NHS Trust. It also does not necessarily represent the views of the authors.”

“If you are in agreement, I would like to contact you directly to talk through our service and how we put patients, their families and carers at the heart of all that we do within the service to facilitate recovery and ongoing management of this debilitating condition.”

Our CEO Sonya Chowdhury will be speaking with Ms Buckley later this week.

In addition to contacting the service, we also submitted a response directly to the BMJ online. This is still being undergoing the moderation process and we hope to see it posted soon - although Ms Buckley’s email says she has been informed by the authors that the submission is to be removed.

“It does not reflect the authors’ views on the realities of living with, managing or treating CFS/M.E.,” she says. “It was naïve of the authors not to consider the implications of a wider publication via the internet of what was intended to spark debate in the medical arena. They are very sorry for any distress they may have caused.”
 
Messages
15,786
Two new responses to the Meme letter are at http://www.bmj.com/content/329/7472/928?tab=responses

Re: What causes chronic fatigue syndrome? A question for Dr Collings
23 June 2014
Dr Collings and colleague (18 June) cite a study suggesting that being ASIAN confers resistance to CFS.

Are there, even in Asia (arguably starting at the Landstrasse in Wien, girdling half the globe - Turkey, most of Russia, all China, Nippon, Hawaii, Afghanistan, Burma, Thailand, Malaysia, Indonesia........), perhaps, tranquil islands, where dwell, perhaps, Lotus Eaters, who are not labelled with CFS?

Cultural immunity. Hmm.

Competing interests: Curiosity
JK Anand, Retired doctor
Free spirit, Peterborough

Re: What causes chronic fatigue syndrome?
23 June 2014
Collings and Newton (1) resurrect a ten year old editorial (2) to present an essay on the potential for viewing CFS as a 'meme-mediated' syndrome.

In the Preface to her 1999 book 'The Meme Machine' (3) Susan Blackmore writes that most of the ideas in her book were conceived whilst bedbound for many months with a chronic, debilitating, post-viral illness.

Forced to give up work, unable to walk, unable to talk for more than a few minutes, unable to use a computer. But she could read and she could think, and as time went on, make notes. It would be two years or so before Ms Blackmore was well enough to consider working again and to develop her ideas into the book.

Ms Blackmore seems uniquely positioned to contribute to this discussion.

1 Collings AD, Newton D. Re: What causes chronic fatigue syndrome? BMJ 2014 (18 June).
2 White PD. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929 (21 October).
3 Blackmore, Susan (1999), The Meme Machine, Oxford University Press, ISBN 0-19-850365-2.

Competing interests: None declared
Suzy Chapman, Carer
 
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Messages
35
As someone who attended the Essex CFS Service I think you should have some more info.

1. The CBT therapist I saw told me she had not trained in CBT.
2. She argued with me about the classification and said ME is classified as a mental health disorder.
3. The clinic as a whole refuse to support benefits claims because they say it is a 'conflict of interests' - when I talked to the admin about it she eventually got back to me and said that that had come from Peter White at Barts.I can't think of another service who would refuse to support claims if they thought the patient was too ill to work. They clearly thought that about me because mainly they wanted me to do less.
4. They fudge their results - I challenged several people I saw about only writing down what I had said when they could construe it to be evidence of the clinics efficacy. I asked the admin later on the phone if the results of end of treatment surveys etc were sent to 'another place' and she said no - I believe this is a lie.
5. The then consultant physio shouted at me in a very angry way when I questioned the reliability of one of thier forms.
6. The fact that they say things like 'you should do as much on a bad day as a good one' makes it clear they have no idea what they are dealing with. My baseline for that would be to do nothing ever.
 

Cheshire

Senior Member
Messages
1,129
1. The CBT therapist I saw told me she had not trained in CBT.

o_O

The clinic as a whole refuse to support benefits claims because they say it is a 'conflict of interests' - when I talked to the admin about it she eventually got back to me and said that that had come from Peter White at Barts.I can't think of another service who would refuse to support claims if they thought the patient was too ill to work. They clearly thought that about me because mainly they wanted me to do less.

It's for your own good, benefits are preventing us from recovering. See what Mickael Sharpe says in this Unum document p.21 (guess PW opinion is very similar). http://issuu.com/maxhead/docs/unum_cmo_report_2002


upload_2014-6-23_18-1-9.png

So by refusing benefits, insurance companies are not looking to make profits but they are doing an humanitarian action.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
http://www.bmj.com/content/329/7472/928/rr/703041

Suzy Chapman, Carer

Re: What causes chronic fatigue syndrome?

23 June 2014

Collings and Newton (1) resurrect a ten year old editorial (2) to present an essay on the potential for viewing CFS as a 'meme-mediated' syndrome.

In the Preface to her 1999 book 'The Meme Machine' (3) Susan Blackmore writes that most of the ideas in her book were conceived whilst bedbound for many months with a chronic, debilitating, post-viral illness.

Forced to give up work, unable to walk, unable to talk for more than a few minutes, unable to use a computer. But she could read and she could think, and as time went on, make notes. It would be two years or so before Ms Blackmore was well enough to consider working again and to develop her ideas into the book.

Ms Blackmore seems uniquely positioned to contribute to this discussion.

1 Collings AD, Newton D. Re: What causes chronic fatigue syndrome? BMJ 2014 (18 June).

2 White PD. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929 (21 October).

3 Blackmore, Susan (1999), The Meme Machine, Oxford University Press, ISBN 0-19-850365-2.

Competing interests: None declared

------------------------

http://www.bmj.com/content/329/7472/928/rr/703050

JK Anand
Retired doctor

Re: What causes chronic fatigue syndrome? A question for Dr Collings

23 June 2014

Dr Collings and colleague (18 June) cite a study suggesting that being ASIAN confers resistance to CFS.

Are there, even in Asia (arguably starting at the Landstrasse in Wien, girdling half the globe - Turkey, most of Russia, all China, Nippon, Hawaii, Afghanistan, Burma, Thailand, Malaysia, Indonesia........), perhaps, tranquil islands, where dwell, perhaps, Lotus Eaters, who are not labelled with CFS?

Cultural immunity. Hmm.

Competing interests: Curiosity
 
Messages
13,774
As someone who attended the Essex CFS Service I think you should have some more info.

1. The CBT therapist I saw told me she had not trained in CBT.
2. She argued with me about the classification and said ME is classified as a mental health disorder.
3. The clinic as a whole refuse to support benefits claims because they say it is a 'conflict of interests' - when I talked to the admin about it she eventually got back to me and said that that had come from Peter White at Barts.I can't think of another service who would refuse to support claims if they thought the patient was too ill to work. They clearly thought that about me because mainly they wanted me to do less.
4. They fudge their results - I challenged several people I saw about only writing down what I had said when they could construe it to be evidence of the clinics efficacy. I asked the admin later on the phone if the results of end of treatment surveys etc were sent to 'another place' and she said no - I believe this is a lie.
5. The then consultant physio shouted at me in a very angry way when I questioned the reliability of one of thier forms.
6. The fact that they say things like 'you should do as much on a bad day as a good one' makes it clear they have no idea what they are dealing with. My baseline for that would be to do nothing ever.

Sorry to hear about that all Joss, but thanks for posting. I really wish I had recordings of my appointments at a CFS clinic, as they seem to be rather more careful with what they put in writing.
 
Messages
55
Location
London, UK

WillowTree

ME/CFS is NOT fatigue!
Messages
49
Location
Illinois
I wonder if this is a last ditch effort to try to defend their position and avoid responsibility for the harm that has been done to patients by trying to make a serious organic neurological disease into a psychiatric one. The truth of myalgic encephalomyelitis will come out as current and future biomedical research is being done. They are on a dying ship. It may take some time, but they are on a dying ship.