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

Resurfacing briefly from retirement to clarify and update on the following extract from the IAFME document:


On Page 6, the document states (my highlighting):

"Disease classification

"The World Health Organization (WHO) added ME to the neurological chapter of the International Classification of Diseases (ICD) in 1969. In the ICD-10, ME is an inclusion term under post-viral fatigue syndrome (code G93.3). Following two outbreaks in the mid-1980s, the US coined the alternative term “chronic fatigue syndrome,” which the WHO added to ICD-10 and indexed to “post-viral fatigue syndrome.” In its version of the ICD-10 (the ICD10-CM), the US reclassified CFS to be equivalent to the symptom of “chronic fatigue, unspecified” while leaving ME in the neurological chapter. In the ICD-11, the terms “ME” and “CFS” are in the neurological chapter following the precedent set in ICD-10. But WHO staff have submitted an ICD-11 proposal to reclassify the terms to the Signs and Symptoms chapter under the musculoskeletal system section based on the claim that there is no evidence of neurological impairment and that the disease is perpetuated by psychological processes (Dua, 2017). These claims are not supported by the evidence of neurological, immunological, and energy metabolism impairment. (National Academy of Medicine 2015; Komaroff & Cho, 2011; Komaroff et al, 2018a). The WHO has stated that no decision will be made on proposals to change the classification until they complete a systematic review..."​

1 For clarity: Benign myalgic encephalomyelitis was included in the Index, only, for the WHO's ICD-8 and ICD-9. It was not included in both the Index and the Tabular List until ICD-10 was published in 1992.

Reference and screenshots from ICD-8 and ICD-9: Post #172: https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-9#post-96715


2 Dr Tarun Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse. This WHO department has responsibility for both mental disorders and neurological diseases and disorders. Its Director is Dr Shekhar Saxena.

Dr Dua had acted as lead WHO Secretariat and Managing Editor for ICD Revision’s Topic Advisory Group (TAG) for Neurology, an external working group chaired by Prof Raad Shakir. TAG Neurology was sunsetted in October 2016.

The proposal submitted by Dr Tarun Dua (November 06, 2017) was stated by Dr Dua as "[having] been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.”


On November 19, 2018, the proposal submitted by Dua, in November 2017, was marked as Rejected by ICD-11 Proposal platform admins:

https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/569175314


This decision to reject the Dua/TAG Neurology proposal recommending that the terms should be relocated under the Symptoms, signs chapter is accompanied by this brief rationale from ICD-11 Proposal Platform admins “Team3 WHO”:

Screenshot: Accessed November 22, 2018:





Importantly, the decision to retain the terms in the Disorders of the nervous system chapter is supported by the WHO MSAC and CSAC* committees.

*The Classifications and Statistics Advisory Committee (CSAC) takes over the role of the ICD-10 Update and Revision Committee (URC). The last update for ICD-10 will be 2019.


With the Dua/TAG Neurology proposal rejected by WHO classification experts and the MSAC and CSAC committees, this means that these ICD-10 legacy terms continue to stand as per the “Implementation” version of the ICD-11 MMS which was published in June 2018:

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314






Action for ME were informed of this development on November 20.

My November 22 report on this development can be read at:

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Three: WHO rejects Dr Dua’s proposal

https://dxrevisionwatch.com/2018/11...d-11-part-three-who-rejects-dr-duas-proposal/

 

My point, though, is this: they're giving us something that helps us, whether they really believe it or not.

If BACME signs a thing that says CBT and GET aren't treatments, that's important.

If BACME, from this moment onwards, stops outwardly endorsing those treatments, it's easier to argue that they're not suitable.

If even the British Association of CFS/ME is now saying it doesn't endorse the two most controversial treatments in the illness, then it's no longer a question of 'militants' who resist a psychological explanation. It's no longer a 'fringe' group pushing for this. The establishment is now saying it too.

Isn't that a win?

 

"IF"; my mother often used a saying "avec des 'si' on mettrait Paris dans une bouteille"

Yes, I see your point but my point is they are saying it to the wrong people.

(anyone tweeted this 'declaration' to Michael Sharpe or Simon Wessely?)

 

Has anyone else not heard of IAFME before, or is it just me?

Also, the Australian signatory group only represent a single state and not Australia as a whole...

Never happens.

 

https://www.s4me.info/threads/iame-international-alliance-for-me-anyone-know-about-them.4108/

 

Especially if it indicates they see their castle is crumbling, and are deciding to abandon anyone left inside. But usefulness and trust are not the same thing. Good if they are being useful, but doesn't mean they can be trusted.

 

Can't help noticing the AFME part of the IAFME acronym ... just coincidence I expect.

 

I think the document is good, it’s what patients but not really AFME themselves have been saying for years. The international influence looks strong but mainly uk and USA formulated? I can’t understand BACME signing a document which is critical of the criteria and approached they themselves have promoted and use.
I don’t know how much WHO can change things is this potentially game changing ? , I’m not easy about lobbying WHO to drop oxford criteria whilst being pretty silent on it over here. AFME are possibly being very forward thinking and sensible on this but copping out of tackling uk barriers , it’s like a jump from yeah yeah, any criteria, CFS umbrella, fence sitting on pace, promoting MRC to “the situation on many detailed fronts is unacceptable”.

 

Maybe hoping no-one will notice?

 

Well who are they trying to please who are they trying to kid

 

Themselves I suspect. Maybe self-delusional, but some might say that would be nothing new?

 

IF @adambeyoncelowe is right it is a win. But of the most humiliating kind.

I guess I'm a hardliner in that for me the best outcome is that they (and others) get their due rather than incorporating themselves on the side of what was right and true all along.

They had aligned themselves to power, the easy option and much harm was done with their full support.
And they could have well known if they wanted to. Many things in life are forgivable. I'm not convinced that's one of them.

 

I agree. However, I also think the best chance we have of getting the outcome we need, is if we allow those who support the soon-to-be vanquished view of ME a face-saving exit route.

They can say, they were doing the best they could with the information available. But many will understand the real score.

If it’s genuine Change for us, or due Come-Uppance for them, I know I’d prefer the change.

 

I'll take it as well. It's just seems such a painful win. And IMO if this sort of thing is to be stopped from happening again and again in the future having some sort of consequence for willful ignorance is helpful.
But I may be wrong on this and how these researchers think about risk/reward.

 

I see validity in both approaches, but tend toward coming down hard on these fraudsters to deter others. Otherwise, face-saving exit routes are not enough disincentive for these types. It is best they are excised.

 

Jessica Bavinton is on the BACME Executive Committee:






Jessica Bavinton
Founder Director Vitality360 Limited & Specialist Physiotherapist - BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME

Jessica is a national therapy leader in the field of CFS/ME, and was nominated to participate in this clinic by the Association of Young People with ME (AYME: see link). She is respected by professionals and patients for her contribution to research, and for work on NICE guideline development. She is also known and held in high regard for her teaching to therapists, both inside and outside NHS services nationwide.

She trained and supervised a team of research therapists as a therapy leader in the PACE research trial for CFS/ME. Jessica is committed to ensuring that Graded Exercise Therapy (GET) is understood well and delivered with care. She is a stand for those participating in GET programmes being supported by making changes at the right pace for them, and in particular that participants of GET programmes remain in control of a collaborative process with the therapist.

Jessica is on the BACME (British Association of CFS/ME) Executive Committee and training sub-groups, and frequently delivers presentations and workshops in the field.

Jessica is Founder and Managing Director of Vitality360, and leads a multi-disciplinary team that supports people outside the NHS to access evidence-based rehabilitation programmes. In particular, she supports people retuning to work or study, and leads her team in maximising health and vitality. She works for the NHS, teaching and supervising IAPT therapists in the delivery of Graded Exercise Therapy for people with persistent physical symptoms."

 

I love how everyone involved in this is a leader, a leading light, a pioneer, a champion of this field of research, despite being largely unknown and unheard of by patients, in most cases not even recognized as being knowledgeable at all. They are every bit as much experts in ME as Andrew Wakefield is a recognized expert in autism.

Truly a mutual admiration society. They publish research together, review each other's work, praise each other's words, hand each other awards, call each other leader in the field but only and exclusively by themselves and for themselves without ever bothering to ask the actual patients, which would be devastating to their delusion.

Makes me think of a study I saw passing on Twitter where they asked participants about a hypothetical scenario where someone is labeled as CFS and another is not and participants report feeling more sympathetic towards the CFS label and so it's a net positive and therefore likely means this happens in real life.

No actual patients involved. Nobody asked any patient if this is true, because it would have shown the exact opposite of the imaginary scenario they created. Hell, don't even need to ask, there is already extensive evidence that the opposite is true and this is one of the most highly stigmatized diseases out there, in large part because of the fictitious construct of chronic fatigue and its syndromes, whatever that is.

They basically created an entire area of medicine in which patients are completely irrelevant and where it's a point of pride to contradict and insult us because we're all lazy malingering type A personalities anyway. No point involving us at any point in any of the research, guidelines or review, our perspective is worthless to them anyway.

 

I agree with @adambeyoncelowe that this is a positive development.

The document is quite all right: it lists the problems with GET and CBT, asks for biomedical research and that says definitions without PEM such as Fukuda or Oxford should no longer be used in either research or clinical care. Here are some relevant quotes:

"the Fukuda criteria should not be used as a single instrument for diagnosis in either research or clinical care but can be used as an aid to screen for cases, followed by a full clinical evaluation using criteria that require hallmark symptoms such as post exertional malaise (PEM).

"The Oxford criteria should be retired, and findings from Oxford studies not be used to support recommendations in clinical guidance

"Treatments, such as CBT and GET, tested using the criteria which does not require post-exertional malaise, should not be recommended for people with ME.

"Instead of CBT and GET, we know that disease experts recommend that patients manage their activities to stay within their “energy envelope” to prevent crashes and possible longterm worsening from PEM

"We call upon the WHO to take action to: […]produce a report that identifies current biomedical knowledge about ME and barriers to progress of recognition, research, clinical care and support. […]encourage the use of definitions that require hallmark symptoms of ME to increase the quality of biomedical research and expedite the process."​

It’s quite an achievement to have BACME support these statements.

I’ve also looked at Action for ME’s international strategy. Their primary goal seems to be a resolution adopted by the World Health Assembly (WHA) that calls ME a serious and neglected disease that needs more biomedical research. The executive director of IAFME is Alexandra Heumber. Her resume as patient activist is quite impressive. She has worked for Médecins Sans Frontières and is a former Head of Policy for the Drugs for Neglected Diseases initiative. She played a leading role in advocacy for the adoption of a WHA for Mycetoma, a neglected inflammatory disease. Someone with experience in international public health and lobbying for patient groups.

A resolution by the WHA or even the WHO that calls for more biomedical research and the use of stricter ME/CFS-definitions would be welcome. It could be an extra tool for advocates in countries where ME research is virtually non-existent such as France, Germany, Italy etc. As a Belgian, I can already use this document in advocacy. Opposition to GET/CBT, stricter definitions and more biomedical research are exactly the priorities we are demanding from the government, but which unfortunately are denied to ME patients.

So I think the IAFME is doing excellent work.

 

I'm not convinced all is as it seems though.

Edit: See: https://www.s4me.info/threads/bacme-website-changed-members-area.7068/#post-127270

The letter from IAfME must have been in the works for a while at least for various groups to work together yet it is certainly not reflected in the most current news from BACME. Their symptom management still refers to PACE as the standard for recommended treatment.

From the spring conference:

Fiona Wright: https://slideplayer.com/slide/14764476/

Their news regarding the cochrane collab and withdrawl of the Larun paper is the horrible spin by K Kelland.

I'm thinking that many UK clinical experts in ME will accept that ME is a neurological illness but that the treatment will still be offered by them perhaps with some modifications?

So it depends on what is the outcome with how these groups proceed beyond the signing of the letter to WHO.