1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Did You Have Yourself a Crashy Little Christmas?
Jody Smith may have dodged a holiday bullet this year. She's hoping. Only time will tell. How did you fare?
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,034
    Likes:
    621
    England
    Again @N.A.Wright you have ducked the issue. How it looks to Alex is how it looks to me here in the UK. Dr MyHill has not had a single complaint from a patient. The complaints all originated within the NHS and by Doctors whose primary training is those shoddy guidelines - the changes requested to her website were minimal and the judgements made by a panel of doctors with no expertise whatsoever in the field of ME - further that panel included a close associated of a complainant who should have recused himself.. The fact that you seem to agree with them does not change that fact.

    The type of article written by these two individuals even under the name 'rapid response' contributes to the ignorance and misinformation and their professional position added 'undue weight' to a personal opinion. While the BMJ/Lancet may be known to us as little better than the Sun, or daily Star newspapers (poor quality tabloids for those resident outside the UK), they remain a primary source of information for most GPs. This view regarding those publications is supported by a ruling against them from the press complaints commission vis-a-vis PACE. Anybody working in the field of ME has a special duty of care not to re-enforce negative stereotypes perpetrated against the people in their care. If a person treating black people described them as 'being ill due to laziness' we would call if 'discriminatory' and 'gross professional misconduct'. There is no reason why ME should be any different. In the case of ME forced activity, as usually praticed by the NHS is in fact negligent action.

    You may find it 'boring' to keep hearing the same justifiable anger, we find continuous neglect a great deal more 'boring'. I four example had three underlying medical conditions that collectively formed my 'ME' - it took me less than 2 weeks with severe mental dysfunction to work out what tests were needed, and less than two months to establish the follow up tests. All of this with no medical training. It took me more time to get a doctor to do the tests than it did to work out what was wrong - I was proven correct by those tests.

    The kind of nonsense we have been discussing here is why most GPs are so useless - it is they quality of information they are given.

    Equally I agree with @heaps that failure to consider the symptoms is why we don't move forwards, but I found that my GP glossed over my symptoms because of the very attitude that this kind of 'article' or 'rapid response' promotes. Our GPs are actively encouraged to ignore our symptoms: this is a failure of diagnosis 101 and highly unprofessional at best, negligent at worst.
     
    Last edited by a moderator: Jul 1, 2014
  2. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,034
    Likes:
    621
    England
    Agree in principle Heaps, but doctors here routinely ask about any medical conditions before presecribing and are actively trained to ignore our symptoms (there is a copy of their training video on Utube).
     
    heapsreal likes this.
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    Its far too premature for me to say much about where my book is heading, but there are many layers to these problems. The concept of an efficient market is one of them, which is an idea the basic premises of which have been falsified. So is the idea that we are rational consumers. Dealing with economics is one issue, as its driven as much by political ideology as the facts. The actual prediction rate of most economists is not much better than chance in any investigation I have become aware of. Yet we base our financial decisions on their advice?

    These problems cross psychological, rational, economic, accounting, legal, scientific, philosophical, cultural, political, promotional and managerial boundaries. There is no simple answer. That does not mean we cannot point to pieces of the problem and say that piece is probably a part of it.

    My point of reference to German war crimes was to give a clear an obvious rebuttal to the idea that protection under law is permanent. If the people of a country really want to change it, it will happen. We always have the power, and those in power always pretend we don't. What we need for change though is numbers, which is why its very hard to do if most are unaware there is even an issue.
     
    Leopardtail likes this.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Susan Blackmore, who developed the idea of memes, has now replied:
    http://www.bmj.com/content/329/7472/928/rr/759419

    I find some of her response annoying. I think it was a high-risk strategy referring to her as an expert who "seems uniquely positioned to contribute to this discussion".
     
    WillowJ, Simon, Sidereal and 2 others like this.
  5. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    I actually find some of Blackmore's comments more offensive and annoying than the original comment about memes.

    She labels everyone who complained about the original meme comment, including the ME Association, as "thoughtless and aggressive."

    She complains that people have taken offence "at the idea that their genuine illness may have psychological causes and memetic aspects." But the original post about memes did not assert that CFS has "memetic aspects". Unless I've misread it, it described CFS as a meme. Period. It's also rather uninformed, patronising, and a broad sweeping generalisation, to say to patients that their "genuine illness may have psychological causes." (Where is the evidence that CFS has a psychological 'cause'?)

    She then goes on to say that "a better understanding of memes, and better evidence, might help." But does the ME/CFS patient community really need to have a better understanding of memes? Any more than cancer patients do? And who, exactly, should have a better understanding of the evidence? Those who are up-to-date with the biomedical research, or the "care providers" who are at a complete loss to understand their patients (because their model of illness doesn't fit the patients) and so resort to name calling along with utterly ridiculous discussions in relation to a severely debilitating illness.
     
    Last edited: Jul 1, 2014
    Min, rosie26, Artstu and 9 others like this.
  6. Cheshire

    Cheshire Senior Member

    Messages:
    173
    Likes:
    466
    France
    She reduces ME/CFS to mere tiredness.
    Once again, CFS=CF.
    Things won't change till we're stuck to that idea.
     
    WillowJ, ahimsa, Min and 1 other person like this.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    "When all you have is a hammer, a lot of things look like nails" or "Beware of people who have one, and only one, good idea" come to mind with regard to her response.
     
    SOC, Min, ukxmrv and 4 others like this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    She also doesn't seem to distinguish between there possibly being meme aspects to any disease (an interesting suggestion, and arguably correct in some aspects), and ME/CFS being dismissed as being entirely a meme (what the authors actually suggested).

    I also didn't say the letters were "batshit crazy", but rather "bordering on batshit crazy". A somewhat important distinction, especially since she could have left in those two words after "sick and warped" and had one quote instead of two. But I guess that would have looked a bit less impressive than the more accurate reality.

    I think she felt her memes were being attacked and responded to that aspect in a thoughtless and inappropriate manner.
     
    SOC, Min, rosie26 and 5 others like this.
  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Where did you refer to 'batshit', Val? I can't see your Rapid Reply. Must be missing it. You got a link? Thanks.
     
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    Bob and Firestormm like this.
  11. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Notice a familiar pattern here? It's not the authors of the original 'meme' comment who are at fault. It's perfectly OK for care-providers to dismiss an entire group of patients (supposedly under their care) as inventing their symptoms. Instead, the patient community is at fault for being "thoughtless" and for daring to assertively take offence!
     
    Last edited: Jul 1, 2014
    mango, moosie, WillowJ and 9 others like this.
  12. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Blackmore's BMJ comment is entirely devoid of science or evidence. (Perhaps commentators should try reading the large body of research before commenting about an illness or illnesses!)

    It suggests that some patients who complain of unexplained symptoms of fatigue only do so because they've heard someone else complain of the same symptoms. Unexplained chronic fatigue is obviously highly heterogeneous, so the entire population of patients with unexplained chronic fatigue cannot legitimately be dismissed as suffering from a meme and cannot be labelled as suffering from a psychological illness. Or, if the suggestion is that a subgroup of CFS patients have a memetic illness (i.e. the patients have invented their symptoms in copy-cat fashion), then this means these particular patients have a psychological disorder misdiagnosed as CFS. So, in this case, it's a misdiagnosis, not a meme.

    The post contains an illogical, and excessively insulting, line of reasoning.

    I accept that doctors often give a CFS diagnosis because they are at a loss as to what else to do with a patient for whom they are out of their depth in terms of medical knowledge. So, for this reason, it could be said that CFS has a memetic aspect, in terms of the diagnosing clinician. But this is the fault of the clinicians, and not the patients. And to refer to this as a meme is utterly unhelpful. This is simply a case of bad medicine. As the research shows, doctors misdiagnose CFS roughly 40% of the time.


    How ironic!
     
    Last edited: Jul 1, 2014
    Roy S, Min, Cheshire and 8 others like this.
  13. Scarecrow

    Scarecrow Senior Member

    Messages:
    232
    Likes:
    505
    Scotland
    In case you missed someone's experience of the Essex CFS Service:

    It's hardly a glowing testament.

    Most pwME would have sympathy for all the patients attending the Essex CFS service if they were to think that the experience of Joss was representative of what patients have to deal with on a regular basis.

    I've had a similar encounter in Edinburgh (although I wisely declined the CBT on the grounds that I was trying to hold down a full time job). It would be interesting to start a thread where people could post about their experiences of the NHS CFS clinics but I suspect it might be inflammatory.

    Remember that Collings & Newton are or were themselves Essex CFS service staff. It did not surprise me to learn that people who work in NHS CFS services held the kind of attitude that they displayed. I was just surprised that they would so openly express it.
     
    Last edited: Jul 1, 2014
    ukxmrv, Valentijn and Leopardtail like this.
  14. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
  15. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,034
    Likes:
    621
    England
    She is a least midly critical, but failed to point out that people (such as me) develop ME with no idea the disease exists, no reference to information about it, no mental input whatosever regarding the disease. Speaking personally I had been suffering form it for decades without any reference to it.

    Ignoring whether it may or may not have psycholocial aspects, the 'meme' is an unsound principle and the idea that a meme could create PEM is silly. No rational mind would construct fatigue that is worse after sleeping (and sometimes barely existent directly after exertion). The idea that hundreds of thousands of irrational minds would construct this weird symptom is statistically only slightly more likely and the moon being made of strawberry jelly.
     
    mango, WillowJ, Cheshire and 2 others like this.
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    I think it could make an interesting thread. Comments now get spread across lots of different threads (many I never see I imagine).
     
    Leopardtail likes this.
  17. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,034
    Likes:
    621
    England
    I agree, though it might need to be one super-thread bringing it all together plus one thread per service so it's possible to compare them. Perhaps one of those pools at thread start indicating to what extent each person was helped of worsened by the service one year on?

    Anybody know how many current services there are?
     
  18. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    The word 'meme' simply means an idea that is spread between people. So 'meme' applies to many different things.

    'Flu' could be described as a meme: We get ill with flu-like symptoms and we say that we've got flu, even if we've actually got a bacterial infection (i.e. a bad cold) or a non-flu viral infection. The reason that we say we've got flu is because the description of flu symptoms (i.e. the 'idea' of flu) gets communicated from person to person. But the symptoms are real, even if the label of 'flu' is sometimes wrong.

    One could describe any illness as a 'meme'. i.e. An illness is labelled with a particular name because the 'idea' of that illness has been communicated previously. Otherwise, the same illness would have a unique name for each patient. Perhaps 'meme' could apply particularly to heterogeneous illnesses. For example, the concept of liver damage is labelled as hepatitis because of a memetic process over the years. Each type of hepatitis could have been given a unique name if the 'idea' of liver damage had been communicated differently. Imagine a hepatitis consultant saying that their patients suffer from a meme. It wouldn't happen. Instead of conjuring up ridiculous, irrelevant and distracting discussions, they simple get on with their medicine and treat their patients (with respect and courtesy.)

    So it's probably not disputable that some illnesses could be described as a 'meme'. But what benefit is such a discussion. It doesn't add to medical knowledge or to the body of research evidence. It's not a medical discussion. And to what end would a care-giver attempt to describe a patient (under their care) as suffering from a meme rather than an illness? It seems like an attempt to undermine and delegitimise the patient. Any reasonable person can see that the only possible consequence of such a claim is that it would cause distress, and distract from the important job of investigating and appropriately treating the patient.

    If these 'care givers' had read the research evidence and realised that their preferred treatments don't actually improve physical disability, or objectively measured outcomes, in CFS patients, then perhaps there'd be less conflict between patient and care giver, and the patient would not become the enemy. Remember the infamous quote from the failed FINE trial in which an inappropriate treatment was being prescribed? The patients became the enemy, perfectly illustrated by this quote from one of the therapists: "The bastards don't want to get better." The "bastards" refers to the ME/CFS patients in the trial, expressing their belief that a therapy was inappropriate for their particular illness. The patients were later vindicated, and the 'care givers' were proven to be at fault, as the therapy failed to demonstrate efficacy. The PACE trial demonstrated the lack of efficacy for the Essex CFS service's preferred therapies.

    Enough of memes!
     
    WillowJ, Roy S, rosie26 and 1 other person like this.
  19. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    473
    Illinois, USA
    Bob likes this.
  20. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Based on the BMJ comment, I predict that it wouldn't be a constructive discussion!
     
    Last edited: Jul 1, 2014
    Valentijn likes this.

See more popular forum discussions.

Share This Page