UK Times:'What if the thing that’s making you physically ill is your mind?', Feb 2020, Rumbelow [includes ME]

LETTERS TO THE EDITOR| VOLUME 342, ISSUE 8881, P1247-1248, NOVEMBER 13, 1993

Chronic fatigue, ME, and ICD-10

Anthony David
Simon Wessely

Published:November 13, 1993 DOI: https://doi.org/10.1016/0140-6736(93)92234-K

[Paywalled]

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I'm sure I stumbled across a full copy of this letter, a few weeks ago, online, because it was published on the same page as something else I had been searching for, but I can't find it ATM.

But if you go to the Google Books preview here of this book:

Exhaustion: A History
By Anna K. Schaffner


you can read a summary of the letter's thrust under "10 MYSTERY VIRUSES"

(at 9). Note also at (12) our Nasim is cited.

The reported comment from the WHO sounds dodgy to me since there is an Exclusion under F48.0 Neurasthenia and its inclusion term: Fatigue syndrome for the G93.3 terms.

The David and Wessely letter is dated November 1993.

In 1993, the ICD-10 had been endorsed but had still to be adopted by member states. I don't think the UK adopted the ICD-10 Tabular List until 1994.

If memory serves, the ICD-10 Alphabetical Index (Volume 3) was published a couple of years later, in 1996, I think. Chronic fatigue syndrome was added to the Alphabetical Index where it is coded to the G93.3 code. But Chronic fatigue syndrome was never added to the Tabular List for ICD-10 and remains an Index term. (For ICD-11, both BME and CFS are inclusion terms.).

So when David and Wessely wrote that letter to the Editor of the Lancet, there would have been:

In the ICD-10 Tabular List

G93.3 Postviral fatigue syndrome
Inclusion term: Benign myalgic encephalomyelitis

F48.0 Neurasthenia
Inclusion term: Fatigue syndrome

Exclusion: fatigue syndrome, postviral (G93.3)


but no Chronic fatigue syndrome, as the Index wasn't published until a year or two later.


Here's the book preview:

https://books.google.co.uk/books?id=zsV1CwAAQBAJ&pg=PA259&lpg=PA259&dq=1993+++Chronic+fatigue,+ME,+and+ICD-10++Anthony+David+Simon+Wessely&source=bl&ots=QVwpKxAHUM&sig=ACfU3U1zOaA_TzcAsft2NaaOn256muU8NQ&hl=en&sa=X&ved=2ahUKEwi3pcuou8rnAhWjoXEKHepJAFMQ6AEwA3oECAoQAQ#v=snippet&q=1993 Chronic fatigue, ME, and ICD-10 Anthony David Simon Wessely&f=false


If the link won't display the text, click on "View All" then click on Page 259 and the passage should display for you.



Another David and Wessely paper here (with Chalder):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf

DISCUSSION PAPER Management of chronic (post-viral) fatigue syndrome
SIMON WESSELY ANTHONY DAVID SUE BUTLER TRUDIE CHALDER

Sue Butler rings a bell.
 
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At the risk of sounding like that boring person you get trapped with in the kitchen at parties....


The following was sent to an advocate in 2001, as part of a longer communication regarding the 2001 IoP fiasco over IoP's adaptation of the WHO's ICD-10 PHC guideline (1996) after IoP had misapplied ICD-10 codes. They got their knuckles rapped for this by WHO, Geneva and were forced to print correction slips for copies of the guideline which had already gone to press. They tried it on again in 2007 on their website - but we got that sorted, too.


WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College London

Please find below response from Jo Paton to All Enquirers.

STATEMENT ABOUT THE SECTION ON CHRONIC FATIGUE AND CHRONIC FATIGUE SYNDROME ON WEBSITE www.whoguidemhpcuk.org

Date: 16 September 2001

Thank you to everyone who has sent in emails over the few weeks about the section on chronic fatigue on the website carrying the UK version of the ‘Diagnostic and management guidelines for mental disorders in primary care: ICD-10 Chapter V primary care version’. An especial thank you to those of you who have sent detailed suggestions about strategies that sufferers from the condition may find helpful. We have reviewed the wording of that section and checked out the issue of classification with WHO. I promised to get back to you to let you know the outcome of that review and this is what this email is about. We appreciate that the changes that we propose to make to the website will not meet the desires of at least some of you who contacted us.

1. Scope of the review

Both the original, international, WHO version of the ‘Diagnostic and Management Guidelines’ and the UK version were produced following a thorough consensus process involving a wide range of people and professionals. The sort of review that we have been conducting over the past weeks has been a very rushed one, undertaken in holiday season, involving only half of our Editorial Board who happen to be available and none of the broader consensus group and with no opportunity for a meeting to thrash out controversial or difficult points. We consider that the only matters that it is appropriate for such a review to consider are:

a) any matters where it is suggested that a clear error of fact has been made. In such a case, it would be appropriate to make an immediate change and not to wait for a full process review. We have therefore considered the issue of classification and

b) suggestions that have been made by people with experience of the condition about what is helpful and which are clearly ‘neutral’, beneficial and non controversial.

Several of you have made suggestions for changes that go beyond those two categories. These include suggested changes in dosages of medications recommended and detailed suggestions about the treatment of physical symptoms. We believe that these suggestions deserve proper consideration and discussion and we have carefully put them aside to be considered during the next full up-dating process. We think it would be inappropriate for us to make such changes ‘on the hoof’ as it were.

2. Classification of Fatigue Syndrome/Chronic Fatigue under ICD-10

We have sought clarification of this matter from WHO and quote below from a statement published by the then Director of the Division of Mental Health.*

In ICD-10, `Fatigue Syndrome’ is classified as an inclusion term under F48.0. Neurasthenia. `Postviral fatigue’ [sic] is excluded from this category and should be classified as G93.3. This latter category mentions `benign myalgic encephalitis’ as an inclusion term.

* Note from Suzy: I don't think this "statement published by the then Director of the Division of Mental Health" was a public domain statement and it's not known which former WHO Director of Mental Health had originally issued the statement, in which year, for what purpose or to whom. But it may have been written by psychiatrist, Dr Norman Sartorius.

“ Although in clinical practice it is often very difficult to determine the role of viral infections in chronic fatigue, and although scientifically the need for two separate categories is not well established, these have been adopted for ICD-10 because of varying recording practices. It is to be hoped that the issue of the classification of fatigue syndrome will be resolved through research in the coming years, so that adjustments can be made in ICD-11, if necessary.

“ In the meantime the following rules are recommended for the coding of `fatigue syndrome’ according to ICD-10:

“ Category F48.0 Neurasthenia [fatigue syndrome] should be used for all patients fulfilling the criteria for this disorder. If the neurasthenic syndrome develops in the aftermath of a physical disease (in particular influenza, viral hepatitis or infectious mononucleosis), the diagnosis of the latter should also be recorded.

“ Category G93.3 Postviral fatigue syndrome should be used for conditions with excessive fatigue, following a viral disease, that do not fulfil the criteria for F48.0 or where no further clinical evaluation as to these criteria are performed.”

“ The use of the term `benign myalgic encephalomyelitis’ should be avoided, until the status of this condition has been clarified.”​

We have checked extensively and are sure that this statement from WHO has not be superceded by any more recent statement.


[Extract from communication from Jo Paton ends.]


Edited to add: The WHO licensed a working group assembled by the IoP to adapt the WHO guideline: Diagnostic and management guidelines for mental disorders in primary care: ICD-10 Chapter V primary care version (1996).

The original WHO 1996 guideline had been developed by a work group chaired by Prof Sir David Goldberg. Goldberg also led the IoP's version which was adapted from the original WHO publication for UK use.

Now in his mid 80s, Goldberg also chairs the PCCG working group for the development of the ICD-11 PHC, which has not yet been finalised and released.

The IoP published their adaptation under the title:

WHO Guide to Mental Health in Primary Care. Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. London: Royal Society of Medicine Press Limited, 2000.

and it is not an official WHO guideline.

In 2007, IoP once again misapplied ICD-10 F45 codes to CFS and ME on their website, but the late Connie Nelson (who had challenged the IoP in 2001) and me were able to get this resolved with Jo Paton.
 
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anniekim said:
Mind boggles! Sounds like she is on the brink of advocating for an authoritarian state.
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The whole MUS denial-of-disease project is an authoritarian's wet dream.

It is one of the reasons I so loathe the Wesselys and Crawleys of the world. The damage they are doing goes waaaaaay past this little corner of medicine. It has horrendous implications across all of governance.
 
Jonathan Edwards said:
I had forgotten - he was a co-author on the 1989 paper that claimed to be a speculative hypothesis paper about CBT for ME yet went on to say what should be done about 15 times (before any trials had been done). Perhaps the worst of all papers in the field.
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A critical and grim piece of history, that should be engraved on their tombstones as a stark warning for future generations.

Dx Revision Watch said:
At the risk of sounding like that boring person you get trapped with in the kitchen at parties....
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Don't ever stop being that person. :thumbup:
 
James Morris-Lent said:
So this guy is a 'neuropsychiatrist' for how many decades,
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There was a time when he became a "psycho-neuro-immunologist". Don't know what became of the immunological component.

The mention in the article of that symptom of the patients eyes rolling and the inferences made seems reminiscent of the remarks by Thomas in 1987, 1990 and 1993 that the symptoms shown by the Royal Free patients on testing by EMG were consistent with volitional behaviour. That seems to be something which cannot be left "hanging" but needed further testing or, otherwise, explanation.

The article was useful in one respect. I usually deplore newspaper headlines of the type "Married woman,42, …". I saw one in the Grauniad only a couple of days ago. Here, however, most usefully, we have "Anthony David,61,...". A slight air of deference in one of SW's multitude of papers had led me to believe that David was slightly older and more senior than he. At the time of his contributions to the "ground-breaking" papers that would put him at 29/30. Infectious diseases consultants, trained in an era when polio was present, were retiring still baffled. Fools rush in.
 
This elephant doesn't often forget but it's taken until this morning to remember where it might have been filed.

In attachment and for the interest and personal use only of readers of this thread.

Letter to Lancet, Nov 1993, AD and SW.

CF, ME and ICD-10
 

Attachments

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Jonathan Edwards said:
I had a peep. It is too dreadful to even register for this month's free peepie.

I was quite interested by Thought for Today today on BBC Radio 4 Today. A regular lady priest was agonising over the issue of whistleblowers in the context of the Chinese doctor who reported the coronavirus and got duffed by police and then died of the virus. She could not decide whether whistleblowers were a good thing because they revealed the truth or troublesome because we need to have faith in people we value as experts. Jeeze, I thought, are there really people so constipated in the mind that they prefer to have faith in charlatans than hear that they are charlatans?

The odd thing is that it seems to me that twenty years ago nobody would have been so gauche as to say something so dumb. Saying really dumb things got weeded out; at least I thought it did. Now weeding out dumb things is seen as dumbist - you know, discrimination and that.

Thank God for S4ME.
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I think part of the problem is that news sources now consider airing every view to be evidence of neutrality. But a man who believes the moon is made of cheese should not be given the same platform as Stephen Hawking.

But also, scandalous and salacious stories sell papers, so there's that too...
 
Sean said:
Don't ever stop being that person. :thumbup:
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Well that's very tolerant of you, Sean.

I'd like to add the following observation and then I'll shut up about ICD and coding: amongst some patients and some advocates a reverence towards the WHO and their classification experts has developed over the years which, in my experience, might be somewhat misplaced.

Two official statements of clarification issued by the WHO's Dr B Saraceno (2001) and Andre l’Hours (2004) have served us well down the years. But these WHO statements skirt delicately around the issue of Chronic fatigue syndrome in the ICD-10 Index.

According to a February 2009 response from Dr Robert Jakob, WHO Classifications, Terminology and Standards Team, terms that are listed in the Index may be:

a synonym to the label (title) of a category of ICD;

a sub-entity to the disease in the title of a category;

or a "best coding guess".

In indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify whether it views the term as a synonym, a sub-entity or a "best coding guess" to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis.

Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis and includes no guidance within ICD-10's Tabular List or in the Instruction Manual on how coders and clinicians on might differentiate between the two when assigning a code.

(Note in the U.S., Donna Pickett and her colleagues at CDC have issued statements of guidance for coders/clinicians on when PVFS might be applicable and when the U.S. specific entity, R53.82 Chronic fatigue syndrome NOS, should be considered instead.

In the absence of specification within ICD-10 and in the absence of clarification by WHO HQ, Geneva, I make no assumptions about how ICD-10 views the relationship between any of the three terms coded to G93.3 (now 8E49 for ICD-11).


Latterly, WHO classification experts have become disturbingly sloppy in their use of terminology.

I have been in direct communication with various WHO and ICD-11 classification leads since 2012. In my communications, I have always referred to the three ICD-10 and ICD-11 entities as they appear within the classification, namely:

Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

But in email responses from Dr Robert Jakob and others, I have noted "Chronic fatigue syndrome" being used generically for all three terms, despite the fact that the title term in ICD-10 is Postviral fatigue syndrome, and remains so for ICD-11.

I have been horrified to see "chronic fatigue" used by WHO staff, when all three terms are being referred to.

As you can imagine, it makes my trunk curl to see such casual use of terminology from terminology experts.

In the November 2017 proposal from WHO staffer, Dr Tarun Dua, she had used the following terms in her proposal rationale for dumping "ME/CFS" [sic] in the Symptoms, signs chapter, as a child category under: Symptoms, signs or clinical findings of the musculoskeletal system.

"Chronic Fatigue Syndrome Proposal"

[But the legacy concept title term is Postviral fatigue syndrome and the proposal should have been presented in the context of that term.]

and

"Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)"

["Myalgic encephalitis" does not exist in ICD-10 or ICD-11, though it is included in SNOMED CT.]

["ME/CFS" does not exist in ICD-10 or in ICD-11. The abbreviations: "PVFS"; "ME"; and "CFS" are included in ICD-11 but all three are listed separately and as Index Terms.]


Dr Dua went on to use "ME/CFS" throughout the rest of her supporting rationale. At no point did she set out what she proposed for the hierarchy between the two ICD entities: Benign myalgic encephalomyelitis; and Chronic fatigue syndrome; nor did she state where she proposed to stick the ICD-10 legacy concept title, Postviral fatigue syndrome - the existence of which she appeared to have conveniently ignored.

Dr Tarun Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. She specialises in epilepsy and dementia.

She had served as WHO secretariat to the Topic Advisory Group for Neurology and had been the advisory group's Managing Editor. She told me her proposal had been submitted on behalf of the TAG Neurology advisory group (though that group had been sunsetted in October 2016).

Her lack of accuracy and specificity around the WHO's own terminology was curious and unacceptable. She was asked to correct the terminology and provide her proposals for a revised hierarchy between the three terms - but she never did and neither did her line manager, Dr Saxena, despite receiving formal letters from Forward-ME (which I had drafted).

This proposal should have been rejected outright by the Proposal Mechanism admin teams and returned to Dr Dua for redrafting and re-submission, since it failed to follow the ICD-11 conventions for setting out proposed changes and had used terms which don't exist in ICD.

So I don't have too much confidence left in the WHO.
 
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It is fascinating to see from that letter to the Lancet that David and Wessely sent. Can anyone explain the objection to the term myalgic encephalomyelitis on the basis of lack of supporting evidence whilst endorsing the name "neurasthenia". What is the evidence for weakness of nerves, and is that intended in a literal or figurative sense?

On the other hand there may be no future in trying to engage with people who believe that the world can be seen as it actually is, with no inverted commas in sight.

It is also interesting to see the opprobrium heaped on the patients regarding the names. Behan and Mowbray both expressed dissatisfaction with the name chronic fatigue syndrome, but why engage in debate with more experienced colleagues when there are patients to be bullied?
 
The David and Wessely Letter to the Editor, Chronic fatigue, ME and ICD-10, 1993

is quoted and discussed and several responses to that letter also quoted from in this doctoral thesis:

https://pdfs.semanticscholar.org/85b6/d85f5cb368b99c2195d012b1859b8975a230.pdf

Mind and body in the discursive construction of M.E.:
a struggle for authorship of an illness

June 10th 1998

see from Page 63.
 
large donner said:
Sounds like this women needs a safe space of her own to think it all out!
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Sounds more like she wants a nice safe place where she doesn't have to think at all. No difficult people asking awkward questions, regardless of how valid those questions might be. Just blindly following those in charge and not questioning.

Then again faith is the lady's business I suppose.....
 
These points, 10000%

Sean said:
The whole MUS denial-of-disease project is an authoritarian's wet dream.

It is one of the reasons I so loathe the Wesselys and Crawleys of the world. The damage they are doing goes waaaaaay past this little corner of medicine. It has horrendous implications across all of governance.
Click to expand...

adambeyoncelowe said:
I think part of the problem is that news sources now consider airing every view to be evidence of neutrality. But a man who believes the moon is made of cheese should not be given the same platform as Stephen Hawking.

But also, scandalous and salacious stories sell papers, so there's that too...
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adambeyoncelowe said:
Just a thought: if we give this traffic, it might only encourage more of the same. If someone can archive the page and link to that, it might be better than clicking through (I appreciate most of us will just read the screenshots).
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Definitely, super important Vs search engine indexing algorithms. Not sure if an archived version is possible though, because of the paywall(?).

@anniekim, would it be worth removing the URL to The Times article from the original post? The images carry the text :)
 
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