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

Leopardtail

Senior Member
Messages
1,151
Location
England
The current thread is about a specific NHS service, where, just maybe because of the current attention on that service there's a possibility of redirecting in a small way, how that service is delivered, to the benefit of ME/CFS patients. Shifting from a cure focus to a management focus with patients expressly leading the process, would be achieveable even under NICE. Railing against the iniquities of psychiatry and the power structures of the modern world isn't going to do a thing to help ME/CFS patients in Essex.

That may be what it looks like from the other side of the world, but that is a very poor representation. Implimentation of NICE guidelines is cost driven, it's the lowest common denominator in a health service that is being thrown headlong into a market model. One of the ironies about the Southend issue is that the problems there make it more likely the future contract for the service will go to a private concern where any change to the service will be impossible because of contractual penalties and patient participation in service delivery is not being written into the £15 billion worth of outsourcing that is happening in NHS England.

The reference to Myhill is simply wrong, for who as a GP in private practice (ie not an NHS contract), the NICE guidelines have only very limited relevance. The GMC does not operate surveillance but responds to complaints and as far as I can tell the issues Myhill faced were around complaints about information presented on her website, which she was subsequently required to change because some it didn't meet the professional standards demanded by the GMC. As a body the GMC isn't fit for purpse, not because it harrasses good doctors, but because it does not operate energetically enough for the interests of patients and does not penalise bad doctors sufficiently.

Seriously - Godwin's Law ! In a discussion about a local NHS ME/CFS service ? Lets hope none of Collings and Newton's colleagues have been drawn here by the controversy. Most NHS staff, even those critical of psychiatry would have sympathy for all the staff working in the Southend ME/CFS service, if they were to think the attitudes expressed in this thread are what the staff there have to to deal with on regular basis.
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.
 
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Leopardtail

Senior Member
Messages
1,151
Location
England
I will partially agree with you there but will say that there is always a concern with missing something else thats underlying even if they think cfs/me is some type of depression/anxiety and this is within the prehospital and emergency departments(it should be). It depends on the symptoms presenting, something like chest pain, shortness of breath even just feeling generally unwell there is always a baseline set of observations and if abnormal will investigate and treat further. chest pains should all get an ecg and maybe a blood test, breathing issues a doc should listen to chest sounds and minimum of oxygen saturation test done which is simple and non-invasive. If one is generally unwell its not uncommon to have an infection so a high temp is a reasonable first assessment to do and depending on other symptoms a doc may authorize blood and urine test. Blood pressure and pulse rates are just standard.

But in this emergency setting i guess they are looking for life threatening or potentially life threatening as well as easing suffering in the short term. Outside of this people are referred back to their gp's or another specialist etc or maybe told to wait things out and if things worsen to comeback to hospital.

I guess what im saying is that if u have certain symptoms that u think could be life threatening ie related to your heart, breathing blood pressure, conscious level etc then dont put off going to see a doctor or a hospital. The above basics should be done depending on the symptoms present, but most clinicians with any type of experience have probably underestimated certain patients because of some other previous medical issues be it anxiety depression, cfs etc and run some routine tests and suprisingly to them have found something unrelated to their past history, maybe some type of heart arrythmia, maybe anemia or a urinary tract infection, the list goes on.

Maybe the best advice i could give is to not mention cfs/me but just concentrate on your immediate symptoms first and get the basics ruled out, maybe instead of saying u have cfs/me, say u have felt run down for several months of post viral fatigue for a few months. I think this gives them a clear mind without any bias??

The thing is if it is a cfs/me type symptom then theres not alot they are going to do anyway other then supportive treatment which they would probably treat without mentioning cfs/me, example if u had some type of pain that they couldnt really explain, they should give u some type of pain relief or if your blood pressure is high then they should treat this. if u have a urinary tract infection then they will treat you with antibiotics.

The problem with paramedics and emergency hospital staff is they dont really see conditions as a priority unless u have a broken bone sticking out your skin or your having symptoms of a heart attack. I guess they are geared towards emergency/ immediate life threatening stuff, so when its ruled out i guess they can come across as unempathetic but its probably more related to them standing down from being on high alert. But in saying all that, some people in emergency medicine can be a bunch of arseholes, but i do think its a minority as its just not their role or specialty looking after chronic ongoing conditions. There are enough people though working in this field though who probably have chronic conditions that will understand you and realise that chronic conditions can just wear you out, they just arent geared to treating it.

cfs/me should really be treated by a gp and with the help of particular specialists, should?? I think just finding an empathetic gp who is willing to help treat you symptomatically is really the best many can hope for and good to always keep them onside but have to realise their limitations. But still look further afield to find a doc who may have more expertise? Easier said then done. We probably get more help from doing our own research and getting info from forums like this.

Theres no 100% cures, but hey, theres no harm in looking. Even a needle in a hay stack gets found once in awhile.

cheers!!
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).
 

alex3619

Senior Member
Messages
13,810
Location
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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".
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.
 
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Dolphin

Senior Member
Messages
17,567
She then goes on to say that "a better understanding of memes, and better evidence, might help." But do we 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 follow 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.
"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.
 
Messages
15,786
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.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
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.

Where did you refer to 'batshit', Val? I can't see your Rapid Reply. Must be missing it. You got a link? Thanks.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
She labels anyone who complained about the original meme comment, including the ME Association, as "thoughtless and aggressive."
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!
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Susan J. Blackmore said:
A better understanding of memes, and better evidence, might help.
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.


Susan J. Blackmore said:
This thoughtless and aggressive response helps no one.
How ironic!
 
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Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Most NHS staff, even those critical of psychiatry would have sympathy for all the staff working in the Southend ME/CFS service, if they were to think the attitudes expressed in this thread are what the staff there have to to deal with on regular basis.
In case you missed someone's experience of the Essex CFS Service:

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.
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.
 
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Leopardtail

Senior Member
Messages
1,151
Location
England
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".
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.
 

Dolphin

Senior Member
Messages
17,567
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.
I think it could make an interesting thread. Comments now get spread across lots of different threads (many I never see I imagine).
 

Leopardtail

Senior Member
Messages
1,151
Location
England
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.
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?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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!