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

Leopardtail

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I think you could argue that CFS is a meme but its one spreading ignorance amongst the medical profession. Its not spread through families but through medical schools. And it encourages believers like Newton and Collings to attack patients or for believers to block research proposals so there beliefs are not challenged. It encourages believing doctors to cause repeated harm to patients with GET despite countless reports of bad side effects.

The problem is the believers in the CFS are willing to believe the poorest quality research, obvious manipulation of results such as PACE and fail to acknowledge other research looking at cause. They created the CFS name for their meme.

The CFS meme is not new we have seen it with MS, Asthma, parkinsons etc. Its a meme of not accepting we don't understand everything whilst believing that people should be able to control physical effects with their minds. Its irrational but too many doctors believe it.
More to the point we saw the "CFS meme" applied to diabetes with deadly effect for decades. Psychiatry seems to be little more than a science-free religious dogma. The fact that it's frequently at odds with Neuroscience speaks volumes.
 

Leopardtail

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Less rent, less business rates, less cleaning and hygene services, less medical insurance, less standard business overheads - I'd say even on a full patient list which is almost impossible to achieve - top end school teacher salary would be equivalent rather than Banker. NHS physios earn no where near that. Any reason that this particualar physiotherapist should be singled out, or are all the UK's physios somehow objectionable ?
He is objectionable because he peddling vile poisonous lies about our condition, and if he holds these views - perpetrating medical negligence on the patients in his care
 
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He is objectionable because he peddling vile poisonous lies about our condition, and if he holds these views - perpetrating medical negligence on the patients in his care
An accusation of medical negligence needs to be backed up with evidence - no one has offered evidence that meets the usual tests of negligence, and in the absence of evidence the accusation of negligence. It is certainly not a basis for a broad criticsm of UK Physiotherapists, nor for an attack on one individual.

NHS treatment programmes for ME/CFS may not me patient expectations, but the staff following the treatment guidelines are entitled to the same protections as any other NHS employee. In this case two NHS staff made a serious non clinical misjudgement which is now subject to investigation, there is no evidence of spreading lies and NHS clinical staff must be free to hold personal academic views even if those views don't match patient group consensus or prejudice. The issue in this case is about how NHS employees go about expressing views that would inevitably cause concern and distress to patients.
 
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Leopardtail

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An accusation of medical negligence needs to be backed up with evidence - no one has offered evidence that meets the usual tests of negligence, and in the absence of evidence the accusation of negligence. It is certainly not a basis for a broad criticsm of UK Physiotherapists, nor for an attack on one individual.

NHS treatment programmes for ME/CFS may not me patient expectations, but the staff following the treatment guidelines are entitled to the same protections as any other NHS employee. In this case two NHS staff made a serious non clinical misjudgement which is now subject to investigation, there is no evidence of spreading lies and NHS clinical staff must be free to hold personal academic views even if those views don't match patient group consensus or prejudice. The issue in this case is about how NHS employees go about expressing views that would inevitably cause concern and distress to patients.
Very large proportions of Me patients report serious harm done to them when they receive "treatment" from the NHS for ME. Not insubstantial numbers report serious and permanent worsening of their conditions. As such I find your position rather silly.

In addition you raise spurious points about "UK Physiotherapists in general" that have nothing to do with the debate here.

Were a diabetic specialist to espouse nonsense about that disease being 'all in the mind' we would consider them unfit to practice. Psychiatrists with his mindset (referring to White) such as him peddled such egotistical somataform nonsense in times past. The situation ME now suffers has a history from which psychiatry has failed to learn - hence my fully correct assertion that is in fact a religious dogma with no place in modern science. The material in that article makes my view that 'negligence is likely' entirely reasonable as it would the comparable situation above.

Satanist believe their religious practices to be 'good' that does not make them any less unacceptable. Dogmatic belief that they are doing good despite obvious harm does not change the fact that negligence is occurring.
 
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Valentijn

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An accusation of medical negligence needs to be backed up with evidence - no one has offered evidence that meets the usual tests of negligence, and in the absence of evidence the accusation of negligence and "peddling vile poisonous lies" comes across as pretty hysterical.
The BPS model for ME/CFS treatment in the UK has traditionally had minimal patient contact with specialists and GPs as a core principal. 15-20 years ago this was in the form of educational materials for practitioners saying that ME patients should not be permitted to see specialists without the CBT practitioner's consent. While they're a bit less blatant now, there is still much talk about minimizing ME patient visits, even with their GP.

Propagating that dogma or adhering to it is inherently negligent, and has resulted in severe harm in some cases, and even death. A Dutch woman with ME died of cancer a year or two ago, when her GP refused to screen her for it despite family history of breast cancer, weight loss, specific symptoms of breast cancer, and her repeated requests. He required that she stop being treated for ME before he would give her any medical treatment - and that was due to the misinformation spread about ME being psychosomatic and the advocacy against medical treatment for ME patients.

It's a bit of an extreme example, because even under the psychosomatic model doctors are supposed to treat the non-ME symptoms seriously. But when you have a disease with dozens of symptoms, it's very easy for doctors to dismiss every symptom, especially if using a definition of CFS where the actual specific symptoms don't matter because they're all presumed psychogenic.
 
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The BPS model for ME/CFS treatment in the UK has traditionally had minimal patient contact with specialists and GPs as a core principal. 15-20 years ago this was in the form of educational materials for practitioners saying that ME patients should not be permitted to see specialists without the CBT practitioner's consent. While they're a bit less blatant now, there is still much talk about minimizing ME patient visits, even with their GP.

Propagating that dogma or adhering to it is inherently negligent, and has resulted in severe harm in some cases, and even death. A Dutch woman with ME died of cancer a year or two ago, when her GP refused to screen her for it despite family history of breast cancer, weight loss, specific symptoms of breast cancer, and her repeated requests. He required that she stop being treated for ME before he would give her any medical treatment - and that was due to the misinformation spread about ME being psychosomatic and the advocacy against medical treatment for ME patients.

It's a bit of an extreme example, because even under the psychosomatic model doctors are supposed to treat the non-ME symptoms seriously. But when you have a disease with dozens of symptoms, it's very easy for doctors to dismiss every symptom, especially if using a definition of CFS where the actual specific symptoms don't matter because they're all presumed psychogenic.
What does any of that have to do with the specifics of the Southend Hospital service ? A generalised accusation against anyone who might at some point have agreed with a BPS approach to ME/CFS isn't in any way equivalent to a statement that a given health care professional has been negligent. We may not like them, but the NHS has adopted guidelines on treating ME/CFS, therefore by definition any professional abiding by the guidelines can not be professionally negligent and it is intemperate to claim otherwise.

The two principles in the Southend case that can usefully be pursued are, firstly that what was posted in the names of Collings and Newton (remains to be seen whether both are equally responsible) is open to as much criticism as anyone wants to make, but that the authors themselves should not become ad hominem targets. And secondly the fact that what was published and the way it was published were highly likely to cause upset to patients, is something the authors ought to have known and the service management must address that. Piling 20 years of discontent with the BPS model onto Collings and Newton only muddies those issues and frankly no one in the NHS will take that kind of approach seriously.

As to GPs failing to treat, that has nothing to do with the BPS or any other nostrum, it is the role of the GP to properly assess the vast body of information that comes to them from Specialist sources - no GP can have the defence 'I was only doing what 'they' told me'. So insistent is the UK Government on this fact that in England GPs face being ranked on their performance in terms of refering suspected cancer patients to specialist services. It's actually a very stupid idea but it shows the levels of expectation. http://www.bbc.co.uk/news/health-28077586
 

user9876

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As to GPs failing to treat, that has nothing to do with the BPS or any other nostrum, it is the role of the GP to properly assess the vast body of information that comes to them from Specialist sources - no GP can have the defence 'I was only doing what 'they' told me'. So insistent is the UK Government on this fact that in England GPs face being ranked on their performance in terms of refering suspected cancer patients to specialist services. It's actually a very stupid idea but it shows the levels of expectation. http://www.bbc.co.uk/news/health-28077586
There is a real problem with GPs ignoring symptoms dismissing people seeing them as being the worried well. This is encouraged by the 'its all in your mind have some CBT attitude'. I know so many people who have been dismissed by GPs to be found to be seriously ill. And its not just that GPs don't know but they refuse basic testing. So for example, a friend went to the GP with lumps in her arm. The GP glanced at them and said they were fat lumps 'think of them as your friends'. No scanning or checks just a 'your wasting my time nothing wrong with you' look. Her Hematologist consultant had them scanned as 'thats what we have scanners for' and they weren't fat lumps but lumps of leukemia. Whilst that was all happening a different GP dismissed symptoms fitting low platelets and a non functioning immune system. But this isn't an isolated story I've heard so many over the years including brain cancer where the GP send someone away saying they were stress headaches.

Hence I really worry when doctors and therapists suggest not testing because it just encourages patients to feel ill. It seems like a cultural thing that actively needs to be changed; each statement on its own may seem innocuous but when put together they create a culture of ignoring all but the most obvious.
 

chipmunk1

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Hence I really worry when doctors and therapists suggest not testing because it just encourages patients to feel ill. It seems like a cultural thing that actively needs to be changed; each statement on its own may seem innocuous but when put together they create a culture of ignoring all but the most obvious.
It creates a dangerous culture of medical neglect where people are taught to ignore their health problems until it is too late.

The truth is patients often know much better if they are sick or not. It's their body and the doc checks only a few causes among thousands.

Also CBT as used today is a scam in my opinion. A polite way to say: We will teach you how to shut up and stop making trouble.
 
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RustyJ

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As to GPs failing to treat, that has nothing to do with the BPS or any other nostrum, it is the role of the GP to properly assess the vast body of information that comes to them from Specialist sources - no GP can have the defence 'I was only doing what 'they' told me'. So insistent is the UK Government on this fact that in England GPs face being ranked on their performance in terms of refering suspected cancer patients to specialist services. It's actually a very stupid idea but it shows the levels of expectation. http://www.bbc.co.uk/news/health-28077586
Perhaps if you had told us GPs face being ranked on their performance with respect to ME/CFS would this have been more relevant..

It has been my experience, and the experiences of most of the patients on this forum, that if you want to get a diagnosis for any ailment, whether the point of contact is an ambulance bearer, doctor, nurse, emergency ward, hospital, then you do not tell them you have me/cfs, otherwise you risk being diagnosed with 'anxiety', or some derivative.

I have had treatment and testing withheld for this reason. It is not an isolated case, it is a culture. In the UK, in the rest of Europe, here in Australia.
 
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Leopardtail

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What does any of that have to do with the specifics of the Southend Hospital service ? A generalised accusation against anyone who might at some point have agreed with a BPS approach to ME/CFS isn't in any way equivalent to a statement that a given health care professional has been negligent. We may not like them, but the NHS has adopted guidelines on treating ME/CFS, therefore by definition any professional abiding by the guidelines can not be professionally negligent and it is intemperate to claim otherwise.

The two principles in the Southend case that can usefully be pursued are, firstly that what was posted in the names of Collings and Newton (remains to be seen whether both are equally responsible) is open to as much criticism as anyone wants to make, but that the authors themselves should not become ad hominem targets. And secondly the fact that what was published and the way it was published were highly likely to cause upset to patients, is something the authors ought to have known and the service management must address that. Piling 20 years of discontent with the BPS model onto Collings and Newton only muddies those issues and frankly no one in the NHS will take that kind of approach seriously.

As to GPs failing to treat, that has nothing to do with the BPS or any other nostrum, it is the role of the GP to properly assess the vast body of information that comes to them from Specialist sources - no GP can have the defence 'I was only doing what 'they' told me'. So insistent is the UK Government on this fact that in England GPs face being ranked on their performance in terms of refering suspected cancer patients to specialist services. It's actually a very stupid idea but it shows the levels of expectation. http://www.bbc.co.uk/news/health-28077586
This argument simply is not credible. GPs refuse to treat because the very model encourages them to be negligent through deliberate and unprofessional inaction. Furthermore the arguments being made in this thread relate in most part to the original article and the response of Professor White, trying to divert the argument will not change peoples opinion and bring no real value to the discussion.
 

alex3619

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There is a difference between what medical negligence should be, what medical negligence is considered to be by the public, and what medical negligence actually is in the countries in question.

It is not however inappropriate to debate whether this should be considered medical negligence. It is not inappropriate to debate how the law can be changed, and how medical culture can be changed. Indeed a huge aspect of my book on this topic, which has been a decade away at least for two years now, is aimed at medical and medico-scientific culture.

In my view these issues are endemic in medical culture, where the BPS meme has taken off, and where NICE "guidelines", which are not mandatory and have caveats, are nonetheless approaching the status of enforced regulations. Try bucking the guidelines and see how far you get as a doctor. That is in part why doctors like Myhill keep getting harassed and sent to the GMC.

So the issue with the people who wrote the paper is not so much that they are negligent, but that they are immersed in a culture in which negligence is considered the norm. We can debate whether or not that constitutes negligence, but that is semantics and law.

As to protected under law, laws can change. Many of the people tried for war crimes from Germany post-WWII were in fact doing things legal under German law. The law is what we make of it, it can change, and in my view some of the medical practices which intersect with ME need to be made criminal. Its just hard to get things to change, especially when most people including politicians are unaware if there is even a problem. Its also hard to address when legal matters regarding medicine are being handled by doctors. There is risk of vested interest distorting outcomes.

Please note that BPS is not something real, but an idealized construct. If anything deserves the meme label its that.
 

Leopardtail

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There is a difference between what medical negligence should be, what medical negligence is considered to be by the public, and what medical negligence actually is in the countries in question.

It is not however inappropriate to debate whether this should be considered medical negligence. It is not inappropriate to debate how the law can be changed, and how medical culture can be changed. Indeed a huge aspect of my book on this topic, which has been a decade away at least for two years now, is aimed at medical and medico-scientific culture.

In my view these issues are endemic in medical culture, where the BPS meme has taken off, and where NICE "guidelines", which are not mandatory and have caveats, are nonetheless approaching the status of enforced regulations. Try bucking the guidelines and see how far you get as a doctor. That is in part why doctors like Myhill keep getting harassed and sent to the GMC.

So the issue with the people who wrote the paper is not so much that they are negligent, but that they are immersed in a culture in which negligence is considered the norm. We can debate whether or not that constitutes negligence, but that is semantics and law.

As to protected under law, laws can change. Many of the people tried for war crimes from Germany post-WWII were in fact doing things legal under German law. The law is what we make of it, it can change, and in my view some of the medical practices which intersect with ME need to be made criminal. Its just hard to get things to change, especially when most people including politicians are unaware if there is even a problem. Its also hard to address when legal matters regarding medicine are being handled by doctors. There is risk of vested interest distorting outcomes.

Please note that BPS is not something real, but an idealized construct. If anything deserves the meme label its that.
I could not agree more with the points Alex made here. If you spread misinformation and indirectly cause harm or cause other's to act in a way that causes harm you are guilty the person who causes the harm. The "Wheel man" of a criminal gang does not get to claim innocence, the boss of a criminal gang does not get to claim he did nothing, the henchmen in Nazi Germany did not get to claim they were "following orders".

We are all responsible for the direct and foreseeable indirect consequences of our actions. The law increasingly recognises this in criminal activity, it needs to do so in science and medicine.
 
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It is not however inappropriate to debate whether this should be considered medical negligence. It is not inappropriate to debate how the law can be changed, and how medical culture can be changed. Indeed a huge aspect of my book on this topic, which has been a decade away at least for two years now, is aimed at medical and medico-scientific culture.
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.
..............................., and where NICE "guidelines", which are not mandatory and have caveats, are nonetheless approaching the status of enforced regulations. Try bucking the guidelines and see how far you get as a doctor. That is in part why doctors like Myhill keep getting harassed and sent to the GMC.
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.
As to protected under law, laws can change. Many of the people tried for war crimes from Germany post-WWII were in fact doing things legal under German law. The law is what we make of it, it can change, and in my view some of the medical practices which intersect with ME need to be made criminal. Its just hard to get things to change, especially when most people including politicians are unaware if there is even a problem. Its also hard to address when legal matters regarding medicine are being handled by doctors. There is risk of vested interest distorting outcomes.
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.
 
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heapsreal

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Perhaps if you had told us GPs face being ranked on their performance with respect to ME/CFS would this have been more relevant..

It has been my experience, and the experiences of most of the patients on this forum, that if you want to get a diagnosis for any ailment, whether the point of contact is an ambulance bearer, doctor, nurse, emergency ward, hospital, then you do not tell them you have me/cfs, otherwise you risk being diagnosed with 'anxiety', or some derivative.

I have had treatment and testing withheld for this reason. It is not an isolated case, it is a culture. In the UK, in the rest of Europe, here in Australia.
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!!