United Kingdom: Kings College London; South London and Maudsley NHS Trust

I think some of us, myself included, were hugely over-confident about progress being made after Matthees got the PACE data out. These people are so entrenched within medical research that they can simply come up with new ways of promoting and justifying quackery, regardless of what the evidence indicates about their impact on patients. I share your concerns about the James Lind process too.

I think we need to be concerned with the James Lind process but this means participating in it. It isn't coming from the BPS groups so it has a good chance of giving sensible results but it could be high-jacked if we aren't careful. It could be an important thing to influence the NIHR and MRC in the right direction.
 
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So much nonsense there on the various pages, much of it very patronising nonsense. There's too much to even quote or begin to refute. It's way beyond tweaking. Vincent Deary seems to have been responsible for a lot of the pages.

It's interesting to read it, the information for heath professionals as well as the information for patients. I suspect the ideas expressed here are very relevant to those promoted by the Royal Colleges.

Oh, I couldn't resist quoting this one, just because it made me laugh. Apparently the problem with CFS treatments is that they 'may well be ... too evidence based'.
Much has been made of the fact that when badly "administered", Cognitive Behavioural Therapy can be less than helpful in the management of Chronic Fatigue Syndrome. Indeed, despite now very strong evidence (see the recent JAMA review) that CBT is an effective intervention, there was a recent patient conducted survey which showed a high degree of dissatisfaction with implementation of this treatment.

However, we professionals would like to minimise this finding, we cannot ignore the fact that there is a very real problem. It would seem that for some sufferers, the key ingredient of best practice CBT - collaboration - is missing. The experience of this group of dissatisfied customers is that of treatment as rote prescription uniformly administered, a one sided exhortation to do more, exercise, sleep less. Coupled with this is the perception of a lack of empathy for very real pain, distress and disability.

The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice, encouraging the patient to do the right, evidence based thing - do more, exercise, sleep less. What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice; the complex reasons why the imposition of a routine on their current life feels nigh on impossible.
 
So much nonsense there on the various pages, much of it very patronising nonsense. There's too much to even quote or begin to refute. It's way beyond tweaking. Vincent Deary seems to have been responsible for a lot of the pages.

It's interesting to read it, the information for heath professionals as well as the information for patients. I suspect the ideas expressed here are very relevant to those promoted by the Royal Colleges.

Oh, I couldn't resist quoting this one, just because it made me laugh. Apparently the problem with CFS treatments is that they 'may well be ... too evidence based'.

You really could not make this guff up:
"The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice, encouraging the patient to do the right, evidence based thing - do more, exercise, sleep less. What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice; the complex reasons why the imposition of a routine on their current life feels nigh on impossible."

Patronising mumbo jumbo. Total lack of insight into how harmful this would be. No refection at all that the so-called "advice" might be woo hoo.
 
Reframing is an important part of CBT no? By reframing criticism in such a way as to not allow CBT to have any flaws they also put themselves into a position from where it's impossible to solve problems and make progress. Might explain why they keep doing the same things and make no progress.
 
Binkie4 said:
King's College London https://kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/history

So much nonsense there on the various pages, much of it very patronising nonsense. There's too much to even quote or begin to refute. It's way beyond tweaking. Vincent Deary seems to have been responsible for a lot of the pages.

It's interesting to read it, the information for heath professionals as well as the information for patients. I suspect the ideas expressed here are very relevant to those promoted by the Royal Colleges.

Oh, I couldn't resist quoting this one, just because it made me laugh. Apparently the problem with CFS treatments is that they 'may well be ... too evidence based'.

I wonder if it's worthwhile to write a detailed criticism on some of the most harmful parts of this evidence-free space.

see also: https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/health/index

What upset me most is that they talk about how cruel it is for pwME to be not believed but then don't acknowledge that this results in very real material existence-threatening consequences: the denial of support, the denial of getting long enough sick leaves from work, the denying of getting support for housework and care (also for family members if they are children or otherwise dependent and won't get other support because the pwME's illness isn't acknowledged by their doctors, insurers etc.)

Instead, all problems resulting from this denial of support are framed as psychological problems, either of the pwME themselves or their personal network -- either because this is abusive or it is too supportive. Even the case that some pwME will finally receive state benefits (maybe even disability allowance which I think is very rarely acknowledged for ME) is viewed as an obstacle on the way to their recovery.

(Maybe a topic for another thread?)
 
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King's College first said:
CFS has only recently been recognized as a distinct condition by the medical community. A recent report by the Royal College of physicians officially proclaimed it "real"
K.
King's College then said:
This marks the most recent stage in a long debate within the medical community and society at large concerning the nature of what is now called (in Britain anyway) CFS.
Wut?
 
Binkie4 said:
King's College London https://kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/history

I wonder if it's worthwhile to write a detailed criticism on some of the most harmful parts of this evidence-free space.

Much of the content on these KCL pages is very old. Deary has long since moved to another institution. The text by Mary Burgess PhD - based on the work of Pauline Powell:

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/physiology

is also very old.

I contacted Deary some years ago about the statement I have highlighted in brown, below, asked him to provide a source for that statement and cited WHO ICD-10 coding. He said it had been based on the Joint Royal Colleges Report on CFS (1996) and that he no longer worked for KCL and more or less washed his hands of responsibility for the content.

CFS has only recently been recognized as a distinct condition by the medical community. A recent report by the Royal College of physicians officially proclaimed it "real" in the sense that they recognize a cluster of symptoms which is distinguishable from any other disease. They stated that this symptom cluster appeared to have no one cause, with both physical and psychological problems playing a part in the condition.

CFS has officially replaced the term M.E. (Myalgic Encephalomyelitis), because there is no consistent evidence for the swelling of nervous tissue that this name implies. It has also replaced the term Post Viral Fatigue Syndrome, as the symptoms are not always associated with an initial viral infection.
 
Thanks @Dx Revision Watch .

Much of the content on these KCL pages is very old.

But I think it's still very much what Chalder et al claim about alleged evidence and and also what they offer to pwME?

Apologies for keeping recurring to rather aged stuff and forgetting things: But do we have a good reference on how issuing sick leaves and disability allowance for pwME is being dealt with in the UK?

I realize that, on paper, for recognizing disability the diagnosis should not matter, just the degree of impairments. But if there is no good assessment of impairments, because with a diagnosis of ME you won't be assessed with regards to e.g. cognitive and/ or motor fatigability and in particular not for PEM, then this seems to be a somewhat paradox situation?

Do we have figures on how many pwME in the UK have disability allowance and how this relates to the number of pwME in the moderate or severe spectrum (so by definition are not only severely disabled but also unfit for most work)?

Edited to add: For the U.S., I'm aware of Podell's paper -- see this thread.
 
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John Thompson

@TompsJ


Replying to
@JanetDafoe
3/ History of CFS/ME - King's College London https://kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/history

Reply to Janet Dafoe's tweets. Apologies for format. I'm not on twitter. If you read the link be prepared!!

The Kings’ piece finishes with “Most importantly, there is now a climate of hope around CFS, which was unthinkable just a few years ago.

And who is experiencing this ‘hope’, certainly not patients over the last two weeks, when a handful of eminent BPS clinicians are a being allowed to derail the entire process of evidence based medicine in order to protect their own reputation and unevidenced pet theories.

[corrected some spelling]
 
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I wonder if it's worthwhile to write a detailed criticism on some of the most harmful parts of this evidence-free space.

see also: https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/health/index

What upset me most is that they talk about how cruel it is for pwME to be not believed but then don't acknowledge that this results in very real material existence-threatening consequences: the denial of support, the denial of getting long enough sick leaves from work, the denying of getting support for housework and care (also for family members if they are children or otherwise dependent and won't get other support because the pwME's illness isn't acknowledged by their doctors, insurers etc.)

Instead, all problems resulting from this denial of support are framed as psychological problems, either of the pwME themselves or their personal network -- either because this is abusive or it is too supportive. Even the case that some pwME will finally receive state benefits (maybe even disability allowance which I think is very rarely acknowledged for ME) is viewed as an obstacle on the way to their recovery.

This is one phrase from there worth note "Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance."
 
Sorry, this unexpectedly turned into a rant.

From that history link given in post #23

At the end of the last century, doctors were holding a similar debate over a condition called Neurasthenia. This was characterized by fatigue and muscle weakness, leaving sufferers able to do very little. There was no medical consensus around cause or cure. Some doctors advocated rest, others exercise. Some said it particularly affected successful, active businessmen, professionals, even doctors. Others said it was mainly an illness of females, and was largely "all in the mind".

The fact that the article has the centuries muddled up is proof that it is very old. The last century was the 20th century, not the 19th which is when neurasthenia was introduced and discussed a lot.

If people can still talk about neurasthenia and consider it relevant in any way to ME, even as a historical term, this is absolutely shocking.

According to the wiki article on neurasthenia :

Neurasthenia is a term that was first used at least as early as 1829[1] for a mechanical weakness of the nerves and became a major diagnosis in North America during the late nineteenth and early twentieth centuries after neurologist George Miller Beard reintroduced the concept in 1869.

As a psychopathological term, the first to publish on neurasthenia was Michigan alienist E. H. Van Deusen of the Kalamazoo asylum in 1869,[2] followed a few months later by New York neurologist George Beard, also in 1869[3] to denote a condition with symptoms of fatigue, anxiety, headache, heart palpitations, high blood pressure, neuralgia, and depressed mood. Van Deusen associated the condition with farm wives made sick by isolation and a lack of engaging activity, while Beard connected the condition to busy society women and overworked businessmen.

Note : "Alienist" is an old-fashioned term for a psychiatrist.

That list of symptoms could belong to many, many conditions. For example, when was anaemia first described and understood, could be tested for, and could be correctly treated? Women have been prone to this for ever, because of heavy periods and the resulting iron deficiency. It's as common as muck. And there are many forms of anaemia, not related to iron deficiency, that could be caused by numerous conditions.

How many people had Multiple Sclerosis and were diagnosed with neurasthenia?

How much was known about diabetes in all its forms?

Hypothyroidism couldn't be treated in the UK until the 1890s. Untreated sufferers ended up in lunatic asylums, and there were many untreated sufferers still around until the NHS was created. I imagine there are many sufferers who are untreated in the US even now. Under-treatment is common. Doctors really don't like testing thyroid function if they can prescribe anti-depressants instead. And Central Hypothyroidism is almost impossible to get diagnosed even now.

What about adrenal insufficiency? Difficult to get tested for - and when it is tested for only the primary form is considered worth testing for in many cases.

I could go on and on. There must be hundreds of medical conditions that can be diagnosed and treated now that were unknown, undiagnosable, and untreatable in the 1800s. Those undiagnosed and untreated people were at risk of being described as suffering from neurasthenia in the 1800s, and this is the starting point for many articles on ME, which is unjustifiable and outrageous, in my opinion.
 
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that page is gone. did anyone archive it?

Here you go: https://web.archive.org/web/2019041...oppn/depts/pm/research/cfs/patients/self-help

@Sean - was it still online when you posted it? Would be interesting if it was being changed due to NICE.

Looks like it was - google had these pages online on the 29th: https://webcache.googleusercontent....+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

A very meta archive of the google cache, in case that's of value: https://web.archive.org/web/20211102034705/https://webcache.googleusercontent.com/search?q=cache:tUhk86-fFAkJ:https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/health/index+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

Looks like this is their new page: https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

I always liked this bit from their old pages, as a possible explanation for patient surveys showing disatisfaction with CBT:

The problem may well be that some of our treatments are too evidence based

https://web.archive.org/web/2019041...c.uk/ioppn/depts/pm/research/cfs/health/index
 
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Not sure I remember their old CBT page [edit: David noticed that actually this is still up - it's in a different section of the KCL website]:

Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

https://web.archive.org/web/2019040...ifference/22-CBT-for-chronic-fatigue-syndrome
 
Quite a lot of the content of KCL's CFS pages is old. Last time I looked, they still had stuff on the site from when Vincent Deary was working there.

The awful article:

PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME

By Mary Burgess PhD - based on the work of Pauline Powell.


predated 2004 and remained on the site for years. Look at the number of typos in the final paragraph!

PDF attached
 

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