World ME Alliance, was previously IAFME: International Alliance for ME

[Andy]

Merged thread

Our international advocacy work will be done from Geneva, Switzerland, where key international organisations are based. We are commissioning the work from the Union for International Cancer Control (UICC), collaborating with the team there to leverage its influential network, allowing us to maximise our time, resources and capacity. The UICC, a formal partner of the World Health Organisation, is highly recognised for its work at global level in advocacy in the cancer field and the non-communicable diseases (NCDs), being one of the founders of the NCD Alliance.

We are delighted that Alexandra Heumberat UICC will lead the work, bringing considerable experience in addressing public health issues including access to treatment, human rights, research and development, and pharmaceutical policy. Alexandra has previously been an international advocate for Médecins Sans Frontières, and was Head of Policy for the Drugs for Neglected Diseases initiative.

https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

 

[Cinders66]

Any ideas what it means or if it has any worth?

I was critical previously of Sonya Chowdhury, who seems to have become invisible, going to Geneva on behalf of AFME , no doubt exoenses paid. I couldn't see how it was "where it's at" in terms of what needed addressing and changing and with so much action needed in our own country. Am I right or are they? Is WHO where it's at?

Of note two years ago AFME made a big fanfare about their severe ME symposium. The only outcome of it was them saying they were going to fund an advocate. When questioned on it they've said they haven't been able to raise funds to cover it, but they cover this. Maybe it's going with the times, or maybe it's priorities

 

[Indigophoton]

Of note two years ago AFME made a big fanfare about their severe ME symposium. The only outcome of it was them saying they were going to fund an advocate. When questioned on it they've said they haven't been able to raise funds to cover it

I don't know about this latest initiative, but in general I have got the impression over a number of years that AfME waffle on a lot, but rarely seem to actually do anything useful.

 

[Trish]

'Access to biomedical care' sounds good in theory. At least it's not psychosocial care. But what is biomedical care? Is there any such thing for ME apart from symptomatic treatment for sleep, pain etc?
If they said biomedical research, that might make more sense.

I'm also worried about what kind of briefing about ME they will give their advocate, given that, as far as I know, AfME still haven't distanced themselves from PACE. And what specific aims would they expect her to achieve, I wonder.

Surely, if they really want to influence WHO, they should partner with other ME organisations round the world for this. Otherwise it's in danger of looking like AfME empire building/grandstanding. Didn't Sonya Chowdhury attend the International ME conference in the USA last year and try to make herself into the leader of some kind of international organisation, without any noticeable success?

 

[Invisible Woman]

I read this with a sinking heart.

Sometimes I wonder if they actually set out to downplay the condition.

 

[Cinders66]

Merged thread

 

[Wonko]

Is it just me or does this seem like a very bad thing, the organisation that has done as much to harm pwME as anyone, by getting in bed with the other side and repeatedly, and consistently, pushing their views rather than ours, is now cosying up to an international organisation which has the potential to ruin any hope we might have if it sides with them.

The WHO has been one of the very few, if not only, "medical" source we could use against BPS proponents in our defense, and now a BPS ally is cosying up to them, in our name.

So....good thing...or really quite alarming thing?

 

[Invisible Woman]

I'm viewing it as alarming, until there is solid evidence to the contrary.

 

[Amw66]

@Action for M.E. can you clarify your stance on revised WHO, SNOMED categorisations and IAPT roll outs in UK?

These are issues that are currently causing significant concern for many who have enough to try and cope with and can benefit from the " direct line" of WHO lobbying.
Communication may help allay fears, which given past histories, are not unfounded.

 

[Wonko]

To put it simply, the WHO are already on side (it's unlikely they actually care about ME but their current, published, position is in our favour), so why lobby them unless an attempt is being made to change their position, which is as pro us as it's likely to ever be? What, exactly, are AfME attempting to gain? What is an attempt to lobby the WHO for? Lobbying is used to change an organisations position in your favour, as the WHOs' position is already favourable to us........

Simple question.

 

[Esther12]

That the WHO classification of ME causes White and insurance companies problems by making it harder to turn down patients claims is the key things that they've done.

From White's presentation to Swiss Re (now deleted from their website):

A final point specific to claims assessment, and a question we’re often asked, is whether CFS would
fall within a mental health exclusion, if one applies to a policy. The answer to this lies within the precise
exclusion wording. If the policy refers to functional somatic syndromes in addition to mental health, then
CFS may fall within the exclusion. If the policy doesn’t refer to functional somatic syndromes as well as
mental health then it would be difficult to apply. The point made is that a diagnosis of Myalgic
Encephalomyelitis or ME (a term often used colloquially instead of CFS) is considered a neurological
condition according to the arrangement of the International Classification of Diseases (ICD) diagnostic
codes whereas CFS can alternatively be defined as neurasthenia which is in the mental health chapter
of ICD10.

I can see how Action for ME could be manipulated into being unhelpful here by people telling them that changes to the way things are classified will mean more people are helped, we can all move together collaboratively, etc, and no-one at Action for ME really understanding the details of the changes. At the moment all the stuff about their WHO advocacy has been very vague. Does anyone know the details of exactly what they're fighting for and/or against?

 

[Samuel]

the old thread seems to have disappeared in forum search @Adrian.

here is my post on it: https://www.s4me.info/threads/afme-...contribution-should-be.3489/page-2#post-62191

i find it disturbing that afme are talking to who. it is we who need to be talking to them. caa:cdc::afme:who.

 

[Dx Revision Watch]

To put it simply, the WHO are already on side (it's unlikely they actually care about ME but their current, published, position is in our favour), so why lobby them unless an attempt is being made to change their position, which is as pro us as it's likely to ever be? What, exactly, are AfME attempting to gain? What is an attempt to lobby the WHO for? Lobbying is used to change an organisations position in your favour, as the WHOs' position is already favourable to us........

Simple question.

Not so simple answer:

First, some declarations:

I have no involvement with Action for M.E.'s advocacy work towards raising the profile of ME, in general, via Geneva or via Member States.

I am not involved in the "International Alliance."

I advise selected international ME organizations, on an ad hoc basis, on developments with the revision of coding, classification and terminology systems and on technical matters associated with these systems.

Since last September, I have worked closely with the Countess of Mar (as a Parliamentarian and as chair of Forward-ME) providing briefing materials, drafting documents and advising, generally, in relation to dialogues that have been established with SNOMED CT International, the UK SNOMED CT National Release Centre, and also with WHO's Director of Information, Evidence and Research and with other WHO leads for the ICD Revision process.

Edited to insert: NB: This arrangement ceased on 7 May, 2018, following a letter from the Countess of Mar terminating this arrangement.

I have had no involvement with the presentation that was given by Dr O'Leary at the 28 March Forward-ME meeting, or with the content of either of the two documents issued by Dr O'Leary in connection with that presentation, or with the statement released by the Countess of Mar in response to the first of those two documents. I cannot support a number of opinions and statements expressed in those documents.

I am currently engaged with another advocate in the production of materials to assist stakeholders in navigating the complexities of the various disease classification and terminology systems and to provide clarity in response to the three documents mentioned above.



Having got these declarations out of the way:

To put it simply, the WHO are already on side (it's unlikely they actually care about ME but their current, published, position is in our favour)...which is as pro us as it's likely to ever be?

I'm afraid it's not that simple.

In early 2013, ICD Revision (or TAG Neurology) inexplicably removed the three G93.3 legacy terms from the public version of the ICD-11 Beta platform.

Following lobbying by myself in collaboration with selected international advocacy groups, the three terms were restored to the Beta draft, on March 26, 2017 with this caveat:

“While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”


On March 27, 2017, Mary Dimmock and I submitted our own detailed proposals and rationale, which can be found here:

http://bit.ly/ICD11proposal

This proposal remains unprocessed.


The WHO had clarified several times, in 2015, that there was "no proposal and no intention to locate CFS, ME under the Mental and behavioural disorders chapter." In February, this year, WHO's Dr Robert Jakob also stated that they will not "dump CFS in the Signs and Symptoms chapter."

No further proposals were submitted by ICD Revision or on behalf of TAG Neuology, until November 6, 2017.

The TAG for Neurology had ceased operations in October 2016, so responsibility for the G93.3 legacy terms now lies with WHO classification experts, the WHO department for Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and the new Medical Scientific Advisory Committee (MSAC), that will be processing over 1000 outstanding proposals.


On November 6, 2017, WHO's Dr Tarun Dua submitted a new proposal via the Beta draft Proposal Mechanism.

Dr Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and specializes in dementia, epilepsy and some other neurological disorders. She is the former Managing editor and WHO secretariat to TAG Neurology (which as I say, had ceased operations in October 2016).


Her proposal is for Deletion of Postviral fatigue syndrome from the Disorders of the nervous system chapter and relocation of "Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)" [sic] to the Symptom, signs chapter under parent: Symptoms, signs or clinical findings of the musculoskeletal system.

Dr Dua has clarified that the proposal has been submitted on behalf of Topic Advisory Group on Diseases of the Nervous System [TAG Neurology] and that it "reiterates the TAG’s earlier conclusions." Dr Dua would not provide answers to any of the other questions that have been raised with her.

Following an exchange between the Countess of Mar and Dr Dua's line manager, Dr Saxena, on January 29, 2018, "Team WHO" (likely Dr Robert Jakob's Beta admin account) posted a message on the proposal mechanism:

"...Any decisions regarding this entity are on hold until the results of a review become available."

(Part of the remit of TAG groups had been to conduct scientific reviews for specific categories or category blocks, where it was felt these might be required. In February 2017, Dr Jakob had referred to an ongoing "scientific review". A couple of months later, the Written Response to an Australian Senate Question had also stated, "WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.")


WHO's Dr Grove has also reiterated that a systematic review will determine if the [G93.3 legacy] categories need to be moved to any other specific chapter of ICD-11.

And he later clarified:

That the draft ICD-11 will be frozen for finalization at the end of May in preparation for the release of an initial version of ICD-11, in June 2018.

That the scientific review is expected to be completed by mid-April.

That the outcomes of the review will be provided for review by the Medical Scientific Advisory Committee (MSAC).​

That new proposals posted on the platform will become part of the workflows of the maintenance mechanism of ICD-11 and be processed in an annual cycle. Results will be communicated, as soon as the involved committees have agreed on the recommendation on how to go about a specific proposal.

That the current updating cycle foresees a 3 yearly updates to the classification structure, for the first update of ICD-11. Later updates to the classification structure may occur only at 5 yearly rates. Improvements in relation to user guidance, addition of terms or providing clarifications will be supported on an annual base.​

There has been no confirmation as to whether the "scientific review" was completed in April, and if so, whether any outcomes from that review are now with the MSAC, for their consideration, or how long the MSAC might take to evaluate any potential new recommendations.


So it remains unclear whether, or at what point, ICD Revision might post new proposals on the Proposal Mechanism.

It has not been clarified, either, but we assume that the joint proposal submitted by me and Mary Dimmock, in March 2017, is also "on hold" and that the Dr Dua proposal is similarly "on hold", pending the outcome of the review, and any new proposals potentially arising out of it.


Add to the above uncertainties...

Mary and I are still pressuring for Exclusions for CFS and ME under Bodily distress disorder.

Uncertainty also continues over whether the BSS disorder construct will be approved for the ICD-11 "Primary Care version" (the 27 mental disorder publication that is in preparation)* and if so, which criteria options might be proposed to be taken forward - one of which is for a BDS-like symptom cluster option, another is for a "simpler" criteria set.

*Note: The ICD-11 Primary Care version (27 mental disorders, only, is not a WHO mandatory classification). There is no available date for this publication's projected completion and release.


There is still the issue of the use for ICD-11 of the BDD term which is already in use for the differently conceptualized, BDS disorder construct, developed by Fink et al (2007, 2010).

See:

Why ICD-11 core version's BDD proposal IS VERY problematic for ME and CFS patients, and why exclusions are essential:

https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf


By rights, whatever is in the Beta draft at the point at which the draft is frozen at the end of May 2018, should go forward to the initial release, in June 2018.

But at any point after the initial release, we might potentially find new proposals posted by ICD Revision on the Proposal Mechanism for stakeholder review and comment.

We have asked how long stakeholders would be given to scrutinize and comment on any new proposals posted - but no clear answer has been provided.

The Proposals platform will be remaining open for new proposals from ICD Revision and from public stakeholders, after the initial version of ICD-11 has been released, in June.

So rather than thinking "WHO are already on side" and "the WHOs' position is already favourable to us" my experience with WHO and ICD Revision, since 2010, has been notable for ICD Revision's lack of transparency, for their obfuscation, for their failure to consult with stakeholder groups, for pissing us about for over ten years and still not making decisions, despite the significant body of literature and reports placed at their disposal (since mid 2015) and despite the fact that the initial version of ICD-11 is scheduled for release this June.

Notable also, for their ability to redirect stakeholders' questions to the Proposal Mechanism - then ignoring those questions.

For introducing the SSD-like, BDD into the core edition, when 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.

For progressing with a disorder name (Bodily distress disorder) that is already used synonymously with the Fink disorder term "Bodily distress syndrome (BDS)", when researchers and clinicians, including Fink et al, themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs, with very different criteria, which capture different patents sets.

So you must forgive me if I sound somewhat jaundiced and that I cannot agree with you that we are currently in a good place with ICD-11.


By the way, I am given to understand that meetings that took place in Geneva earlier this month were not specifically to discuss matters of coding and classification.

As a result of the documents issued in relation to BSS earlier this month, a significant number of enquiries have had to be fielded with requests for clarifications and I have been extremely burdened with extra work this last three weeks.

So I shall not be around much to add any further comment to this post.

But I should have some concise guides to current classification and coding issues to post here next week.


Suzy Chapman
Dx Revision Watch

Further posts related to WHO coding have been moved here:
WHO ME/CFS coding

 

[Trish]

Thank you, Suzy, @Dx Revision Watch for this detailed clarification. I'm afraid I can't take in all the detail, but I am very grateful to you and Mary Dimmock for your work on this.

@Action for M.E., I hope your employee who is lobbying the WHO in Geneva is up to speed on all of this. Can you point us to some more detail about the brief AfME has given this worker for their advocacy work? I am unclear from the snippets we have seen here about what AfME has created this role for, and what you expect them to be able to achieve.

 

[Cinders66]

Just to point out Sonya chowdhury started attending WHO stuff at Geneva 2-3 -4 (poor memory) years ago. I can't understand the long post above to know when fresh concerns over WHO started. AFME might have problems by not really recognising any difference between CFS and ME.

 

[Sly Saint]

“Our aim is that the WHO and its Member States consult with people affected by M.E., in a transparent and meaningful way, to lead a global public health response to this illness,” says our Chief Executive, Sonya Chowdhury. “This would include supporting increased research and ensuring appropriate education for healthcare professionals. We can only achieve our aim by building relationships and collaboration with M.E. organisations across the world, which offers a unique opportunity to open up effective communications with the WHO.”

Many concerns about this;
yes pwME want more research but more of the kind of research that will help identify the causes and possible treatments, not more psychological therapies;
AfME apart from saying 'biological' and 'biomedical' occasionally do not seem to understand this crucial point. PACE is the classic example that as yet they have failed to robustly and categorically criticise publically.

Similarly, Esther Crawleys various research projects (SMILE, MAGENTA, FITNET) plus her talks that have been used to try and undermine advocacy efforts to expose the faults; no condemnation from AfME. Her links with the BPS crowd in the Netherlands......nothing from AfME.
BACME inviting Per Fink to talk at their conference; where were AfME on this? The list goes on.

And yes "appropriate education for healthcare professionals"; this should be done/created in consultation with all appropriate patient organisations and with patient input; not webinars created with the assistance of Hazel O'Dowd that only seem to confirm the PACE therapies.

https://www.s4me.info/threads/action-for-me-has-joined-s4me.2944/page-14#post-59124

As Suzy has shown, the issues with the WHO classifications are complex, the situation in Europe generally for pwME is also complex (you only have to read some of @Joh and Cos posts about whats been going on in Germany to see this); so I really worry about this 'International Alliance' spearheaded by an organisation that does not appear to understand or be concerned about what is happening in its own back yard.

 

[Barry]

I keep getting the uncomfortable feeling that @Action for M.E. seem more motivated by promoting their brand image, than really getting to grips with what is best for PwME. Is it just me?

 

[Invisible Woman]

I have to admit I'm worried.

Have AfME raised or publicised any of this on their forums or social media? It seems they're very quick to get any media attention going, so why be so quiet about this?

This has the potential to cause as much, if not more, harms than the PACE trial. Even if I didn't question @Action for M.E. 's motives (I mean the organisation & not Clare personally), I question their competence.

Why are they there alone? Have they discussed this with any other charities such as the MEA (@Russell Fleming), including other continental charities or the Irish ME charity?

 

[Dx Revision Watch]

Just to point out Sonya chowdhury started attending WHO stuff at Geneva 2-3 -4 (poor memory) years ago. I can't understand the long post above to know when fresh concerns over WHO started. AFME might have problems by not really recognising any difference between CFS and ME.

I have been reporting on concerns for proposals for the G93.3 terms, on BDD and on BSS since 2010. The revision process began in 2007. Proposals were placed on a public platform from 2010, when the iCAT and then the Alpha Draft were launched, followed by the Beta drafting platform, in 2012.

I cannot speak for AfME, but my understanding is that Sonya Chowdhury has been attending the annual May WHA Assembly meetings.

 

[Action for M.E.]

@Action for M.E. can you clarify your stance on revised WHO, SNOMED categorisations and IAPT roll outs in UK?

These are issues that are currently causing significant concern for many who have enough to try and cope with and can benefit from the " direct line" of WHO lobbying.
Communication may help allay fears, which given past histories, are not unfounded.

As we say here, we are extremely resistant to any move attempting to reclassify M.E. as a "medically unexplained symptom."

I emailed the Countess of Mar last week about the IAPT roll-out and it is on the agenda for our Forward ME meeting tomorrow.

The aim of the IAPT-LTC programme is to ensure that those with long term (physical) conditions (eg. diabetes) have access to psychological therapy, alongside their physical treatment, for comorbid anxiety and depression. This is a positive step given that access to mental health services for this group has been very poor up to now.

However, the guidance being issued (examples here and here) makes it clear that M.E. and/or CFS should be considered as a purely psychological MUS and treated as such.

This needs to be challenged, and we will work with Forward ME to do this. M.E. is not MUS with no organic cause: it is recognised by WHO as neurological and there is mounting evidence of biological abnormalities in patients.

To quote the advocate who sent me these examples: "MUS should not, in any case, imply no organic cause, just insufficient knowledge. Absence of evidence is not evidence of absence. A sicker patient does not need more psychological therapy, they need treatment for their underlying condition." [My bold]

The work we are undertaking to clarify proposed changes around the ICD-10 continues - again, we are working with Forward ME on this.

While the classification of M.E. and/or CFS at WHO level is of course relevant to our international advocacy work, it is only part of it. You can read more about our international advocacy work here, which includes our Millions Missing event in Geneva on 12 May, and a side event at the World Health Assembly - to raise awareness of M.E. and its impact, with a short screening of Unrest - at the end of the month.