WHO ME/CFS coding - April to May 2018

I'm so grateful and admiring of what you do and how you record it for us all.

And now this rubbish... overwhelming.

 

I have a really bad feeling.

 

I have received clarification, today, that a rep for 25% ME Group was not consulted prior to the sending of the letter in which, among other comments, my dismissal as an external adviser to Forward-ME on coding/revisions of classification and terminology systems was delivered.

Invest in ME, who had been copied into the communication, has confirmed that they had had no sight of the letter, either, nor had they been invited to input into any discussions that may have taken place around this decision or the content of the letter, prior to its being sent to me, yesterday.

Invest in ME has further confirmed that for some years now, they have not been members of Forward-ME (see Letter re Invest in ME 17th July 2014).

Invest in ME is therefore unsure why their name continues to appear in the list of linked organizations which are said to "all participate in the meetings convened by Forward-ME" (see http://www.forward-me.org.uk/LinkedOrganisations.htm) or why they had received a copy of this sensitive communication.

As mentioned in an earlier post, Forward-ME has no formal constitution and although its meetings are held in Parliamentary meeting rooms, the group is an informal group and has no authority of Parliament, nor is it an All-Party Parliamentary Group (which also have no official status within Parliament).

It is beginning to appear likely that the decision to dismiss the external service I have provided, particularly between August 2017 to May 2018 was a decision taken unilaterally by the Chair of Forward-ME and not in consultation with its member organizations.

If I receive information that suggests otherwise, I will update.

 

I want to know what was/is going on. I want a statement by those who were responsible. I want to know the motivation and what's the plan. This, after O'Leary's statement that BDD is no problem for ME... It's very strange. This is so very troubling...Imagine ME under BDD or the like in ICD and/or Snomed - that would be the end. We always could argue with WHO's classification.
And it would be reasonable for Invest in ME to sharply correct Foward-ME for faking signatures.

 

Suzy, so sorry and cross to read this. Thank you for all your hard work and all you do, it’s truly admirable. This is really the last thing we need right now, as far as I can see you’re the only person that knows anything about this stuff, firing you ludicrous. I’m sorry.

 

@Inara

Some clarifications:

The WHO has confirmed in written statements and verbally that there is no intention and no proposal to relocate CFS, ME under the Mental, behavioural and neurocognitive disorders chapter of ICD-11, which is the chapter in which BDD is located.

The problems with BDD are that the criteria thresholds are very low. Some patient groups, including CFS, ME patients, are potentially vulnerable to misapplication of a diagnosis of BDD, or of receiving an additional diagnosis of BDD on top of an existing diagnosis.

For ICD-11's defining of BDD, the persistent, distressing symptoms don't have to be "medically unexplained."

BDD can be applied in patients whose symptoms are being caused by general medical conditions and diseases.

For example, it would be possible to have an existing diagnosis of cardiovascular disease + a diagnosis of BDD; or diabetes + BDD; or CFS + BDD, if the clinician considers the patient also fulfills the criteria for an additional diagnosis of BDD.

There are considerable problems with BDD, just as there are with DSM-5's SSD, on which BDD is based.

Additionally, the term "Bodily distress disorder" is already being used interchangeably with the Fink et al diagnostic term, "Bodily distress syndrome," and this has been the case since at least 2007.

So although BDD and BDS are differently defined and characterized, have different criteria and capture different patient sets, they share a similar name. The ICD-11 BDD term risks being confused and conflated with "Bodily distress syndrome," a disorder construct designed to capture CFS, ME, IBS, FM and some others.

In our joint proposal of March 2017, Mary Dimmock and I requested Exclusions under BDD for CFS and ME. I have also submitted a separate proposal for Exclusions under BDD (and a separate proposal for the Deletion of BDD).

A further point: the only construct under consideration for the core ICD-11 edition to replace most of the ICD-10 Somatoform disorders is BDD, and this has been the case since BDD was first inserted into the Beta draft, in February 2012.

So it's not a question of: Will the WHO choose BDD or will they choose BSS for the core ICD-11 edition? Or that there is controversy over which they will choose. They have only ever proposed BDD for the core edition.

For those who can manage a long read, I expand on these problems here: https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf


For SNOMED CT:

BDD was added to SNOMED CT in July 2017. It was added as an exact match for ICD-11's BDD.

SNOMED CT does not have a system of chapters like ICD-10 and ICD-11. Terms in SNOMED CT are arranged under Parent terms.

In SNOMED CT, CFS and ME were located under the Multisystem disorder parent class - which was OK.

But the Multisystem disorder parent class was retired for the January 2018 release. (This wasn't specific to CFS, ME - it affected 89 other terms that also lost their Multisystem disorder parent.)

While I was working with the Countess of Mar, it was agreed that a request for the addition of a new parent term for CFS, ME would be submitted in the name of Forward-ME.

A proposal and rationale was drafted for adding the parent "Disorder of nervous system" to CFS, ME. This was accepted and in June or July, I should be able to confirm that for the July 31, 2018 release of SNOMED CT International Edition, CFS, ME has been assigned under a new parent, "Disorder of nervous system."

Once this change has been included in the International Edition, it will be incorporated into the various country extensions, when they release their next updated versions.

(The SNOMED CT terminology system does not have Exclusions like ICD-10 and ICD-11 does, so we could not submit a request for exclusions for CFS, ME.)

I need to make it clear that there has been no suggestion of "faking signatures."

The letter I received was signed, "Mar Chairman, Forward-ME."

The letter does not clarify whether the org reps that are members of Forward-ME had been given an opportunity to review the letter and had reached consensus over its content.

It is also unclear from the letter, whether the intention to dispense with my services as an external adviser had been discussed with the org reps. From the information I have received, so far, it suggests that the org reps (or not all of the org reps) were aware of this decision or that this letter was being sent.

I hope this is clearer, but please let me know if you need further clarifications.

 

So far, it sounds like IiME never responded to the Countess of Mar's communication? That's not the same as formally leaving. If they were unable to send representatives generally, then the other Forward ME members may have assumed they were still part of the group but simply not in attendance? So I don't think it can be implied that Forward ME is falsely pretending IiME is a member if IiME couldn't be bothered to formally leave the group. I know you didn't say that, Suzy, but that seems to have been what some people took away from the thread. If IiME did formally leave, then obviously their logo needs to be taken off the website.

 

This is the Letter posted in 2014 by the Countess of Mar in respect of Invest in ME.

http://www.forward-me.org.uk/Letters/I have enormous respect for all the work that Invest in ME are doing to promote research into ME.docx

What the other Forward-ME members might have assumed is irrelevant. It is the understanding between the Chair and Invest in ME that is relevant.

I have not implied that.

Invest in ME's Richard Simpson has clarified that Invest in ME Research are not part of Forward ME and do not receive any information on/from their meetings or input anything into them. That the letter had been copied to someone who has represented Invest in ME at a couple of APPG meetings in the past.

I agree that the Countess of Mar needs to update the members list to reflect the change in Invest in ME's relationship with Forward-ME that had taken place in 2014, and to also update her mailing list.

I find it quite extraordinary that not only were several non Forward-ME org reps, including Carol Monaghan MP, copied into a sensitive letter, but that it was also mailed to an individual with a connection to an org that has not been part of Forward-ME since 2014.

 

I posted this elsewhere also:
https://twitter.com/user/status/970296868998610944

https://twitter.com/user/status/970361862830415872

https://twitter.com/user/status/970567246446759936

https://twitter.com/user/status/970571488377139201

 

Pooh!
But still, who knows...with all these unpleasurable surprises and developments...

This is the best psycho invention ever! They have achieved where others before wouldn't dare to go - as a psychologist/psychiatrist into biological medicine. Now we might get the mixture between psycho stuff and objectivity (let's see what will remain of objectivity). And the insurance companies party! All they have to do is to say that a psychological disorder - BDD - is actually the underlying problem....you know the rest.

Plus all the (economic) growth! Imagine at least 7% more "sick" people per year that can be assessed via alternative and psycho treatment. And this in times of zero rates.

 

That would have been me - I am sorry.

I think it shouldn't be ok to put signatures on documents without having the explicit permission to do so. In case of Foward-ME, I understood that every organization remains independent. If all agreed, however, that every produced document by Forward-ME may be signed without agreement of the organizations - fine.

I sincerely apologize, see above.

Edit:

This is the problem I have with this.

 

That's OK, Inara.

No signatures were included in the letter, no names of organizations or names of organization reps.

That is my concern, too.

Edited to add:

The Forward-ME website states: "We seek to maximise consensus but respect those who have differing views. Members are free to opt in or out of specific group activities."

The letter fails to clarify which Forward-ME members opted in and which members opted out of:

a) the decision to dismiss me as an external adviser;
b) the tone and content of the communication as sent to me;
c) the decision to copy in non Forward-ME org reps, including two clinicians and a Member of Parliament;
d) whether this was a "chair's action" decision for which Forward-ME members were not consulted.

 

The Beta draft was frozen on April 4, 2018 for purposes of quality assurance in preparation for the release of an initial version of ICD-11 in June.

The Beta draft is expected to be frozen again at the end of May in readiness for release in June.

What is contained in the frozen release will go forward for the June publication. The core edition will remain stable until January 2019, when it will be prepared for presentation for endorsement at the May 2019 WHA Assembly.

April 4, 2018 Frozen Release:




April 4, 2018 Frozen Release:




Caveat: See Timeline: https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf

Indeed. And the problems with BDD are the same as the problems with DSM-5's SSD.

WHO has conducted no field trials specifically testing the safety, validity, reliability, utility, prevalence and acceptability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.

But in the DSM-5 field trials for SSD (from which BDD is derived), three groups were studied for the field trials:

488 healthy patients; a "diagnosed illness" group of 205 patients with cancer and malignancy (some in this group were said to have severe coronary disease) and a "functional somatic" group comprising 94 people with irritable bowel and "chronic widespread pain" (a term used synonymously with fibromyalgia).

15% of the cancer and malignancy group met SSD criteria when "one of the B type criteria" was required; if the threshold was increased to "two B type criteria" about 10% met criteria for dual-diagnosis of diagnosed illness + Somatic Symptom Disorder.

For the 94 irritable bowel and "chronic widespread pain" study group, about 26% were coded when one cognition was required; 13% coded with two cognitions required.


The suggestion that ICD-11's BDD is not particularly problematic for ME patients does not stand up to scrutiny.

 

@DXrevisionwatch

I am sure you will not feel obliged to answer this query if you feel constrained on the matter.

Is the problem one of substance or of form? Is it about what has been said or written, or is it about how and where it appeared?

In either case one would have expected a more substantial process to resolve the serious issues, which it seems probable, remain extant and unresolved, with limited ways forward.

 

But did they reply to that letter? All we've seen is a letter asking if they wanted to leave, not a statement that they are leaving. Sorry if this has been posted elsewhere and I've missed it! Just trying to get the evidence straight.

I explicitly said you didn't say that.

Potentially. The statements from TYMES Trust above leave no doubt that it's her organisation. There doesn't seem to be a voting structure or anything formal like that. She's therefore technically not done anything wrong.

And I'm still not sure if Richard Simpson formally left Forward ME or just stopped responding to messages. There is a difference. It's possible there's been a miscommunication, and if I were Simpson, I'd contact the Countess formally to request the removal of the logo.

Agreed.

Agreed. However, as it's her group, she presumably has the right to copy in anyone she wants to? She isn't limited to members only. The whole thing does seem rather autocratic, and it makes one wonder why charities want to be involved, but it doesn't look like the Countess has broken her own rules.

 

I do not know whether Invest in ME replied or not. But to reiterate Richard Simpson:

"Invest in ME Research are not part of Forward ME and do not receive any information on/from their meetings or input anything into them."

If Invest in ME are not being sent information about Forward-ME meetings - agendas, minutes etc. I think it reasonable to assume that the Countess of Mar does not consider them part of the group.

Quite so. But people sometimes paste forum content elsewhere out of context and I need to make it very clear that I had neither said nor implied that, myself.

Sure. She's the chair. Her bar, her rules. She can do what she likes.

But that is not my point. Quite frequently statements and letters issued in the name of Forward-ME are drafted and circulated among the Forward-ME reps for their consideration and input. On this occasion, it is unclear whether any org reps had inputted into, or signed off on the content of the letter, as sent to me.

And that is my point. And had you received the letter that I received - I think you would want to know that, too.

I would hope that Richard will do this. But since Invest in ME don't receive information about meetings, then perhaps Invest in ME does not consider there is any misunderstanding other than that the Forward-ME website needs updating and the mailing list also needs updating.

I don't think there is anything else I can add about why someone who had at one point represented Invest in ME at APPG meetings received a copy of the letter that was sent to me.

There are no Terms of Reference and no Code of Conduct for Forward-ME members. Again - her bar, her rules.

But as the recipient of a most unpleasant communication, one has to question why did the sender consider it appropriate to copy beyond the immediate Forward-ME org reps. It is not as though there had been any earlier communications between myself and the Countess of Mar which had included two clinicians, Carol Monaghan MP and Dr Diane O'Leary.

 

The problems are these (and I choose my words carefully as I have been advised this forum is being monitored):

1 The decision to dismiss my services without any prior discussion.
2 The rationales given for that decision.
3 The tone of the letter.
4 Statements made within the letter.
5 The copying of the letter to individuals who are not Forward-ME org reps, when no previous communications involving these individuals had taken place.
6 The lack of clarity over whether this decision was a chair's action or whether all or selected of the Forward-ME member orgs had been consulted about this decision and consulted about the content of the letter, as sent to me.
7 And hence, a lack of clarity over which orgs agree with the decision and the statements made about me in the letter and which don't.

 

I should also have added:

"[SSD had] an astounding 7% false-positive rate in the general population (Dimsdale, 2012).

from paper:

Allen Frances¹, Suzy Chapman². DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. 1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com
Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525 http://www.ncbi.nlm.nih.gov/pubmed/23653063


For further discussion of SSD:

Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c http://www.ncbi.nlm.nih.gov/pubmed/23719325

Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580 http://www.ncbi.nlm.nih.gov/pubmed/23511949

 

Thanks for the clarification. It's all certainly very odd.

 

It's political. And it's dirty.

I haven't toed the line.
I am not presenting a "united front."
So I have had to be dispensed with.

More to the point: how many of the member orgs are presenting a "united front" and what might the implications be for a "united front"?