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

Dr Tedros G has triggered a scattergun response via a social medium not well suited to organised effort.

Some points that need to be considered:

Who can co-ordinate a project?

What are the objectives?

To what extent do the objectives align with demands already made by organisations in the recent past which have not been responded to by the WHO and Dr Tedros, himself?

Which department within the WHO would be responsible for liaising with a co-ordinator and collating and reviewing materials provided?

What would the time-frame be for provision of materials?

How would these be sourced?

Can a Zoom meeting be convened with Dr G and colleagues to discuss how best to manage this project?



I would be very wary of putting this in the hands of MEAction/Jen Brea

see thread:

Structural spinal problems and ME - blogs and social media

https://www.s4me.info/threads/struc...gs-and-social-media.11138/page-54#post-282256

 

Here we go:

Jen and #MEAction already all over it.

I despair.

Edited to insert Twitter URL if screenshot is removed:

https://twitter.com/user/status/1298092362728525824

 

Ever heard of "don’t count your chickens before they hatch"..?

 

Erm...counting chickens before they hatch always has one result, or should do - zero chickens.

(This assumes that eggs come into existence in isolation, in a chicken free environment, but so does the saying.)

 

https://twitter.com/user/status/1298208402972303362

 

Posts relating to CCI haved been moved to this thread.

 

Continued from Post #15


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



The WHO reps at this January 2020 meeting with neurology federations were: Dévora Kestel, Tarun Dua, Neerja Chowdhary, Katrin Seeher, Alarcos Cieza.

According to this report, 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.


https://www.paho.org/hq/index.php?o...-de-sustancias-de-la-oms&Itemid=42050&lang=en

Dévora Kestel to direct WHO Department of Mental Health and Substance Abuse

Dévora Kestel, Chief of the Mental Health and Substance Use Unit at the Pan American Health Organization (PAHO/WHO), has recently been appointed as the new Director of Mental Health and Substance Abuse at the World Health Organization (WHO). She will be replacing Dr. Shekhar Saxena, who has served in this position since 2010 etc.


Dr Tarun Dua is a medical Officer at the WHO working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders in the Department of Mental Health and Substance Abuse. She is the focal point for neurological disorders in the department.

She specialises in dementia and epilepsy and has co-authored research studies here and here, neurological reports, guidelines and other publications for the WHO.

https://www.alzheimer-europe.org/Co...es/2016-Copenhagen/Keynote-Speakers/Tarun-Dua

I am working as a Coordinator in the World’s Health Organization Headquarters in the Department of Mental Health and Substance Abuse. I am the focal point for neurological disorders in the department. I am leading the work on dementia including the WHO/ADI report on dementia in 2012 “Dementia: public health priority”, organization of First WHO Ministerial Conference on Global Action Against Dementia, March 2015 and the development of Global Dementia Observatory. I have been involved in the development of the mhGAP Guidelines on mental, neurological and substance use disorders (including dementia) and the latest edition of Disease Control Priorities in Developing Countries’ volume on mental, neurological and substance use disorders (including dementia).​

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


In January 2018, Chapman & Dimmock submitted a robust response to the Dua proposal: Full text of our response: http://bit.ly/2o8Gfbs

On November 19, 2018, the WHO rejected the Dua proposal in a decision supported by the WHO Medical and Scientific Advisory Committee (MSAC) and the Classification and Statistics Advisory Committee (CSAC) stating:

"In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision." Team3 WHO 2018-Nov-19 - 07:10 UTC​

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

Katrin Seeher is a Technical Officer at WHO and a psychologist and dementia specialist.

Dr Alarcos Cieza: Dr Cieza oversees the WHO's work on vision, hearing, rehabilitation and disability. Prior to joining the WHO in September 2014, she served as Chair and Professor of Medical Psychology at the Faculty of Social and Human Sciences at the University of Southampton, United Kingdom.


Edited to insert additional text.

 

I have edited a number of posts in this thread that contain information about key WHO personnel to include the information that:

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 diseases and disorders.

Ms Kestel appears to have held this position since at least October 2019.

 

https://twitter.com/user/status/1301926259950268416


https://twitter.com/user/status/1301929807639388160

 

There has been no response from Dr Tedros Ghebreyesus.

 

I have also asked Dr John Grove (former Director of the Department of Information, Evidence and Research; now Director of Quality Assurance for Norms and Standards) who the current incumbent of the role of Director of the Department of Information, Evidence and Research is and was passed on to Dr Samira Asma (Assistant Director-General) for her to respond.

Dr Samira Asma has not responded.


I have also asked Dr Tedros Ghebreyesus, Dr Samira Asma and @WHO_Europe (twice now) whether WHO is developing terminology and ICD codes for Post COVID-19 syndrome (or a similar term). SNOMED CT is currently processing a request for a Concept code(s) for a Post COVID-19 syndrome (or similar term, subject to consultation with clinical bodies) submitted by someone within the NHS on August 19.

None have responded to this query.


I have also asked the WHO's Can Celik (by email) why the Orange ICD-11 maintenance platform page for Comments has been offline for over a week now.

No response so far.


Ah well, 'twas ever thus....

 

For an update on the status of this proposal see Note 2 of this update, posted today, in the thread:

Updates on status of ICD-11 and changes to other classification and terminology systems

Post #435:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-22#post-289704

 

Merged thread
A systematic approach for undertaking a research priority-setting exercise: guidance for WHO staff, 2020, WHO

https://apps.who.int/iris/handle/10665/334408

World Health Organization. (‎2020)‎. A systematic approach for undertaking a research priority-setting exercise: guidance for WHO staff. World Health Organization.

https://apps.who.int/iris/handle/10665/334408. License: CC BY-NC-SA 3.0 IGO


PDF: https://apps.who.int/iris/bitstream/handle/10665/334408/9789240009622-eng.pdf

 

The WHO approved and implemented my February 2020 proposal for the removal of "Benign" from "Benign myalgic encephalomyelitis" for ICD-11 yesterday (November 13, 2020):

See update in this thread:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-23#post-301919

 

Thank you @Dx Revision Watch

 

a great & hard won achievement well done & huge thanks

 

copied post

https://www.who.int/news-room/featu...low-dose-anticoagulants-for-covid-19-patients

 

Copied from Possibility of ME or PVFS after COVID-19, Long Covid, and subsequent posts moved from that thread

From a Solve email

Solve M.E. President Oved Amitay Joins World Health Organization Seminar on Long COVID

Solve M.E. President and CEO Oved Amitay will join other experts as a participant in a series of seminars presented by the World Health Organization (WHO) designed to improve our understanding of the Post COVID-19 condition and optimize the health of patients who have suffered from COVID-19.

Amitay will be featured in the first webinar, Expanding Our Understanding of the Post COVID-19 Condition, held tomorrow, Tuesday, Feb 9, 2021, from 1-6pm CET (4 am-9 am PST). The focus of the webinar will be on finding consensus on the clinical description of Post COVID-19 condition, based on the most up-to-date evidence, acknowledging the uncertainties and defining research priorities.

In it, Amitay will share insights from other post viral diseases, such as ME/CFS, and highlight the scientific opportunity to bridge existing knowledge gaps to benefit people with Post COVID-19 condition, as well other diseases.

The goal of the WHO seminars is to create a forum for sharing scientific data and clinical experiences, while also building collaborations for future research.

To register for this webinar, follow the link below:

http://go.solvecfs.org/e/192652/ster-WN-r1LkC1VRSHCTG7u2nOghjQ/297v2z/190733399?h=Wv8fhTfVGesuyVqoh7OH5U8kSrHXNcT1CGthFLZ8-eY

Upon registration, participants will receive a confirmation email with the information about joining the webinar (Zoom connection details).

Registration will close on Feb 8, 2021 (end-of-day CET).