International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

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Possibility of ME or PVFS after Covid-19

Big thanks to @Andy for posting this. I posted similar on Twitter and got very lucky

https://twitter.com/user/status/1297138221420249089


It's amazing and, hopefully, this will lead to serious action by the WHO.

 

What "serious action" are you hoping for?

 

Well, if the WHO said ME/CFS should be treated as a major health priority for the world, that would be a good start. Highlighting it so that ME/CFS is considered by all researchers studying long Covid would be a good step too.

I am still really shocked by the response so haven't given it that much thought. Do you have any suggestions?

I’ve no idea if he means people will get in touch with me or with organisations that represent people with the illness. The latter would make more sense

 

The WHO is advised by two relatively new committees:

the Classifications and Statistics Advisory Committee (CSAC)

and

the Medical Scientific Advisory Committee (MSAC).


The WHO department that oversees neurological disorders is the Department of Mental Health and Substance Abuse.

This department's Director is Dr Shekhar Saxena, a psychiatrist by training.*See edit.

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.

Dr Dua was not a member of the ICD-11 Joint Task Force but she served as lead WHO Secretariat and Managing Editor for ICD-11's Topic Advisory Group (TAG) for Neurology.


Here are Dua's views on ME, CFS (as set out in her proposal submitted on behalf of TAG Neurology, in November 2017):

https://dxrevisionwatch.files.wordp...1-proposal-dr-tarun-dua-november-06-201-1.pdf


Anyone engaging with WHO will likely be dealing with Dr Robert Jakob, whoever is the current Director of Information, Evidence and Research, Dr Shekhar Saxena and Dr Tarun Dua.

I don't have any suggestions for you and I cannot advise patient organisations as I am retiring at the end of the summer. Organisations will need to find their own way through this - God knows, they've had long enough to establish dialogues.

I would hope that any advocates or organisations considering pursuing this with Dr Ghebreyesus will familiarise themselves with the status of the G93.3 legacy terms for ICD-11:

Update on classification and coding of PVFS, ME and CFS for ICD-11:
https://dxrevisionwatch.files.wordpress.com/2020/08/update-on-classification-of-pvfs-me-cfs-for-icd-11-august-2020.pdf


Edited to add:

Dévora Kestel has replaced Dr Shekhar Saxena as Director of the WHO Department of Mental Health and Substance Abuse - the WHO Division that is also responsible for neurological disorders.

 

There may be a problem over those who have prepositioned themselves for any overtures which might be made.

 

Now the WHO has put @Simon M in charge we might finally get somewhere!

 

We have been getting somewhere with Simon in charge for a while now, but don't spread it around too much.
He likes to keep in the shadows!

 

Not again! It's the same setup as Cochrane! Imagine the kick back if psychiatry had been filed under neurology rather than the other way around!

 

https://twitter.com/user/status/1297305236206280705

 

That didn't last long then. Simon being in charge, that is.

 

https://twitter.com/user/status/1297267900152270848

 

Seems like Simon doesn't want the job anyway
https://twitter.com/user/status/1297262173568339971


https://twitter.com/user/status/1297286398211493889

 

Success has many parents, failure is an orphan. As they say.

 

The ME Association, to date, has not been interested in involving itself directly with the WHO. The MEA's involvement has been done through its membership of Forward-ME.

There is also the currently on hiatus, AfME initiated, International Alliance for ME:

https://iafme.org

https://iafme.org/what-we-ask-for

WHAT WE ASK FOR

The IAFME calls upon WHO and its Member States to:

• Formally engage with the IAFME and its members at the national level in order to address ME patients' barriers.
• Produce a report that identifies current biomedical knowledge about ME and barriers to progress of recognition, research, clinical care, and support. Adopt measures to address these barriers, providing a global and coordinated public health response to ME. Encourage the use of definitions that require hallmark symptoms of ME to increase the quality of biomedical research and expedite the process.
• Continue to ensure that the disease not be moved out of the neurological chapter of the ICD-11 until further research provides the scientific basis for that change.

https://iafme.org/who-we-are

WHO WE ARE

IAFME is a formal collaboration between national organizations representing patients with ME. IAFME’s purpose is to encourage an appropriate public health response from the World Health Organization (WHO) and its Member States to meet the needs of people living with ME in all countries around the world.

IAFME has 12 organizations as members and has been formally constituted through a Memorandum of Understanding (MOU), which lays down the governance and rules of functioning. The secretariat of IAFME is based in Geneva.

----------------------------------------------

I note that Ghebreyesus does not mention the IAFME as a body that has already initiated dialogues with the WHO.

Edited to add: Nor the approaches by the European alliance for ME.

 

The structure and functioning of the WHO's Department of Mental Health and Substance Abuse as the WHO Division which also has responsibility for disorders of the nervous system is a bone of contention with some neurological federation reps.

The working groups advising on the revision of the various chapters in ICD-10 for ICD-11, were known as "Topic Advisory Groups" or "TAGS".

The ICD Revision Topic Advisory Group for Neurology was chaired by Prof Raad Shakir, a former President of the World Federation of Neurology (from 2014-2017). TAG Neurology ceased operating in October 2016 when a number of TAGs were stood down and replaced with the ICD-11 Revision Task Force.

*The ICD-11 Revision Task Force was later stood down and the committees which advise on ICD-11 are now the Classifications and Statistics Advisory Committee (CSAC) and the Medical Scientific Advisory Committee (MSAC).


The Department of Mental Health and Substance Abuse Director (Dr Shekhar Saxena) is a psychiatrist by training but Dr Dua's specialities are neurological disorders like epilepsy and Parkinson's disease.*See edit

Earlier this year, I came across a meeting summary which discussed the positioning of neurological diseases and disorders within the Department of Mental Health and Substance Abuse and the name of this Division.

The response from WHO leads was that this was not an issue currently up for discussion:


(My highlighting)


https://www.eanpages.org/2020/01/09/news-from-the-who/

January 9, 2020

Meeting of WHO with EFNA, EAN and EBC to discuss brain health Report

Participants:

European Academy of Neurology (EAN): Raad Shakir
European Brain Council (EBC): Frederic Destrebecq, Vinciane Quoidbach
European Federation of Neurological Associations (EFNA): Donna Walsh, Tadeusz Hawrot
WHO: Dévora Kestel, Tarun Dua, Neerja Chowdhary, Katrin Seeher, Alarcos Cieza


Overview of WHO vision for brain health and priority areas/conditions

Under the new leadership of Dr. Tedros Adhanom [Ghebreyesus], WHO has been undergoing a major overhaul resulting in the most wide-ranging reforms in the Organization’s history to modernise and strengthen the institution to play its role more effectively and efficiently as the world’s leading authority on public health.

The Department of Mental Health and Substance Use (MSD), which also covers neurology, took advantage of these changes by introducing the idea of setting up three teams within its structure: i) Mental Health, ii) Brain Health and iii) Alcohol Dependence and other addictions.

The concept of brain health had to be suitably explained to the leadership before it was accepted. Introducing this term and forming the team has been described as a paradigm shift. The brain health team is currently being assembled and will consist of up to seven employees.

(Ed: the members of this "brain health" team have not yet been established by me.)

It was said that this team will focus on three topics: global leadership and advocacy, awareness raising and stigma & guidance and technical assistance to low and middle income countries – all underpinned by a focus on developing an ethical framework for action...


DISCUSSION

Prof. Raad Shakir, delegate for EAN, introduced EAN, its structure and aims. He mentioned EAN’s wish to work closer together with WHO and the ICD11-PC would be an ideal project for doing so.

He expressed regret for the lack of “neurology” in WHO’s policy.

WHO made it clear that there are currently no prospects for changing the department’s name and it does not wish to discuss this any further. It was emphasised that we should look to the future and how we can take advantage of new opportunities.

EFNA expressed its appreciation for the new direction that WHO is taking, however it was reiterated that the terminology used by WHO is problematic when we are trying to engage the neurology community in current and upcoming activities. EFNA made it clear that we would encourage WHO, and we will in fact demand, that there is more visibility for neurology in initiatives such as the Mental Health Forum, the Special Initiative for Mental Health etc. where neurology is covered implicitly, but has a very little practical presence both in initiative names as well as in listed disease areas.

However, it is clear that WHO has been working on specific neurological diseases for some time. This has included, to various extents, efforts in the areas of dementia, epilepsy, Parkinson’s Disease and autism.

In future, though, the work will not be based on a disease specific approach – although case studies will continue to feature when necessary. Their upcoming plans are to work more on cross-cutting issues from a rights based and public health perspective. It was made clear that the upcoming work will look at ‘brain health’ rather than ‘brain disorders’ – with an emphasis on promotion and prevention.

As a starting point, MSD is going to develop a concept paper to better conceptualize what “brain health” means. This could, potentially, be underlined by convening a global meeting as a means of consensus building. This, in turn, could result in releasing an informal roadmap or position paper. It is an area where EFNA, EBC and EAN could be involved. It was requested that we are kept involved etc.

-----------------------

Edited to add further information.

Edited to add:

Dévora Kestel has replaced Dr Shekhar Saxena as Director of the WHO Department of Mental Health and Substance Abuse - the WHO Division that is also responsible for neurological disorders.

 

From MEpedia:

https://me-pedia.org/wiki/International_Alliance_for_M.E.#:~:text=A letter was send to,methods and treatments for M.E.”

"On 12 May 2018, IAFME organized a MillionsMissing event in front of WHO headquarters, Geneva, Switzerland. A letter was send to Dr Tedros Ghebreyesus of the WHO calling for urgent action action to address M.E. globally. IAFME asked the WHO to recognize ME as a chronic multisystem disease and to “support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.”[3]"


Did Ghebreyesus even respond to this letter in 2018*? There appears to be no evidence of IAFME receiving any response from him.

*Letter signed by:

The International Alliance for M.E.
ACAF – Associacio Catalana d’Afectades i Afectats de Fibromialgia i d’altres Sindromes de Sensibilitzacio Central, Spain
Action for M.E., United Kingdom
The American ME and CFS Society, United States
Emerge Australia, Australia
Forward ME, United Kingdom
Japan ME Association, Japan
ME CFS Foundation South Africa, South Africa
Plataforma Familiars Fm-SFC-SQM, Spain
Solve ME/CFS Initiative, United States

With support from

Association du Syndrome de Fatigue Chronique, France
Lost Voices Stiftung (Foundation), Germany
#MEAction, United Kingdom
ME/CFS Association Switzerland/Verein ME/CFS Schweiz, Switzerland
ME/FM Society of BC, Canada
ME Research UK, United Kingdom
Millions Missing Canada, Canada
Millions Missing France, France
National ME/FM Action Network, Canada
Open Medicine Foundation, United States
Welsh Association of ME & CFS Support (WAMES), United Kingdom

 

I'm still slightly in disbelief that the head of WHO has said it will reach out to people with ME. Especially as my tweet didn't tag either him or the WHO.

Ha!

Indeed. It needs to go to those with a mandate to represent the community. Assuming WHO do get in touch with me, I think my only job is to talk to them and signpost them on.

This forum (especially since @Andy first raised the point here) and #MEAction are most similar to the patient-led Long Covid groups that the WHO have engaged with (UK LongCovidSos and the Covid Body Politic group, I think). But there are lots of good organisations out there.

PS Thanks to @Dx Revision Watch for all the briefing notes. I don't have the energy to read properly now but it looks incredibly helpful (and perhaps a little worrying too).

 

Wow! Not so much for the wow factor, but for the potential for pwME to be properly heard.

 

Dr Tedros Ghebreyesus evidently did not respond to the letter he received from the IAFME in 2018, which had been signed in the name of, and was supported by a list of international patient orgs. This remains a concern to me.

Additionally, whichever organisations might potentially chase up Dr Ghebreyesus on his apparent current interest in "reaching out" to ME, CFS patient orgs need to be very careful about who they liaise with and who they might be passed on to.


In 2018, following a number of email and letter exchanges between Forward-ME and key WHO staffers, AfME's Sonya C and Alexandra Heumber (IAFME) requested a meeting with the WHO's Dr John Grove (who was at that time WHO's Director of Information, Evidence and Research) and/or Dr Robert Jakob. A meeting with these key personnel was declined and instead, they were offered a meeting with Dr Tarun Dua - who was not prepared to discuss the concerns at that time around ICD-11 coding during that meeting.

Dr Dua is a key staffer in the Department of Mental Health and Substance Use (MSD) which also covers neurology. She holds strong, published views on ME, CFS [1]. Her line manager is Dr Saxena.*See edit

Had Dr Dua and the (by then stood down) Topic Advisory Group for Neurology had their way, ME and CFS would have been deleted from Neurology and relocated under the Symptoms, signs chapter.

Had TAG Neurology had its way in 2013, CFS would have replaced PVFS as the "Concept Title" or "coding target" term and PVFS would have been designated as an Index term.

The Dua proposal was rejected in November 2018 by ICD Revision leads, in a decision supported by the ICD-11 MSAC and CSAC committees. (This decision was also noted in a November 2018 presentation given by the WHO's Dr Robert Jakob and referenced in the Summary Report of the October 2018 WHO-FIC Network Annual Meeting.)

Not all WHO staffers in the Department of Mental Health and Substance Use will have been happy about that decision.

Patient groups need to tread carefully and be mindful of the history over the last 10 years should any meetings be convened to discuss the WHO's response to ME and CFS, in general.


Edited to insert link to text of Dr Dua's proposals for ICD-11.

1 Full text of ICD-11 proposal submitted by Dr Tarun Dua (apparently on behalf of TAG Neurology) on November 06, 2017; Processed on November 19, 2018:

https://dxrevisionwatch.files.wordp...1-proposal-dr-tarun-dua-november-06-201-1.pdf


Edited to add:

Dévora Kestel has replaced Dr Shekhar Saxena as Director of the WHO Department of Mental Health and Substance Abuse - the WHO Division that is also responsible for neurological disorders.

 

Thank you @dxrevisionwatch for that important info and warning to tread carefully.