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

thanks for the tag

 

This post and the following discussion have been moved from this thread:
NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021
_____________________________

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!!

 

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

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?)

 

K.

Wut?

 

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.

 

Thanks @Dx Revision Watch .

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.

 

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]

 

I really wish it was standard practice for all web pages to list when they were created and/or last modified.

In this case I mention dates because I didn't spot any references to Long Covid or Sars-Cov-2, so I'm assuming these pages have been up for a while.

 

Sorry, this unexpectedly turned into a rant.

From that history link given in post #23

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 :

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.

 

Copied posts

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:

https://web.archive.org/web/2019041...c.uk/ioppn/depts/pm/research/cfs/health/index

 

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]:

https://web.archive.org/web/2019040...ifference/22-CBT-for-chronic-fatigue-syndrome

 

The above link no longer exists, but I found it in the internet archive :

https://web.archive.org/web/2021090.../ioppn/depts/pm/research/cfs/patients/history

 

Do we know when this was written? Presumably well before 2000, as it talks about the Twentieth Century as this century and the the 1800s as last century.

Frightening how bad ideas and misinformation can linger.

 

I discussed that issue in post #34 in this thread, and came to the same conclusion as you about the age of the article.

 

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