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

Whilst I don't wish to rain on anyone's parade, there is a history of advocate and advocacy group engagement with the WHO over the last ten years or so, and that history does need to be borne in mind.

The European ME Alliance ( http://www.euro-me.org/index.shtml ) also sent letters to the WHO and received no response.

The WHO has a very poor record for communication with ME and CFS advocacy - so I'm sorry if I can't share the enthusiasm for Dr G's offer of engagement.

 

Maybe it's just me, hopefully it is, but the tone struck me as rather 'sinister'.

 

"We hear you", or "We hear what you say" is usually taken to be merely an acknowledgment and indication that nothing positive will materialise.

 

Which no one does. Yet. We are still fragmented in every way, across organizations but also the researchers do not have a formal body either.

The best approach would definitely be a coalition of the current clinical and research experts, through which we know we can work with, maybe paving the way for a formal body. It has to happen at some point anyway. Maybe the WHO want to hear from the patients but there still has to be some main point of contact within a more or less formal institution.

Which is basically one thing that had we been able to do all along, would already have been accomplished. But most of the organizations are sick volunteers and medicine only works this way through formal bodies. The long Covid people don't have the demoralization of decades of being maligned and lied to their faces, it's going to be hard to get people willing to try again after decades of dismissal.

But it has to be done. Now who has the energy and resources for it? Damn chicken and egg problem.

 

Unless organisations consult with their constituencies over policies they cannot claim a mandate to represent them.

In the context of ICD-11, the WHO took no notice of over 300 patients' views in 2017 or the views of around 30 international organisations. I doubt very much they are suddenly going to be receptive to mass patients' views.

I agree that a coalition of clinicians, researchers and reps from international patient orgs is required. The convening of such a group was attempted several years ago and I was involved in this, but for a number of reasons it didn't get off the ground.

Then the IAFME was set up by AfME and part of its remit was to establish a formal channel of communication with the WHO and to work towards obtain a Resolution for presentation at a future meeting of the World Health Assembly. My understanding is that this organisation is currently dormant following the resignation of Alexandra Heumber, its executive director.

Forward-ME also established a channel of communication with the WHO's Dr John Grove and Dr Robert Jakob - though often had to press for meaningful responses. (Some key WHO staffers are masters of obfuscation).

Emails sent to Dr Saxena requesting clarifications and expressing concerns around Dr Dua's failure to provide adequate responses, herself, were forwarded by him to Dr Dua to deal with. Dua passed these on to the (already stood down) TAG Neurology "for their response"; at that point these communications entered a black hole and no clarifications or responses to the concerns expressed in them were forthcoming from TAG Neurology's former chair, Prof Shakir, from Dr Saxena, Dr Dua or from any other party. This is typical of how the WHO can operate.

Equally frustrating was the WHO's lack of precision around ICD terminology; for example, it was not unusual for Dr Jakob to use "chronic fatigue" or "chronic fatigue syndrome" in emails to me and to others whom I was advising instead of referring to the three discrete terms as included in ICD-10 and ICD-11.

In her formal proposal ostensibly representing "the earlier conclusions of TAG Neurology", Dr Dua had used the term:

"Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)"

"Myalgic encephalitis" does not exist in ICD-10 or ICD-11 and neither does "ME/CFS".

Dua had also omitted to include her proposals for the listing of Postviral fatigue syndrome, which is the ICD-10 "Concept Title" code and as such, needed to be accounted for in any proposals for changes to the legacy hierarchical structure between these three terms.

She had served as Managing editor and lead Secretariat to TAG Neurology but she could not even be bothered to use the three correct ICD terms - which to me, smacks of either incompetence or contempt, or both.


I consider it would be a mistake for a single org to be encouraged to take the lead because all orgs are going to bring an agenda to the table and that agenda may not necessarily be in the best interests of patients and carers.

The chronic Lyme disease community has also experienced considerable problems with communicating with the WHO and has seen the WHO reversing previously agreed decisions.

Edited to expand on how frustrating communicating with the WHO can be.

 

Thank you so much for all the hard work over many years that you have put in Suzy @Dx Revision Watch it scares me to think where we would have been without it, you have made a difference to the lives of millions, and it scares me where we will be when you take your very well earned retirement from it all.

I must say it does alarm me what will happen if they finally do want to hear from patients & go to MEAction - with all the CCI etc stuff so closely associated. The last thing we need is for our voices to be thoroughly discredited by all the unevidenced stuff around all that getting flooded into the WHO through prominent voices.

 

That's very kind, JemPD. Thank you.

Had the release of ICD-11 not been postponed I would have been able to retire a couple of years ago. As things stand, I'll be stepping back in just a few weeks. (I am still waiting on an update regarding the IAPT Data Set v2.0 request for addition of SSD to SNOMED CT UK Edition and on the proposal for removal of the "Benign" prefix for ICD-11.)

Amen to that.

Of course international patient orgs, clinicians and researchers should have got involved with the WHO back in 2010, when the ICD-11 Alpha and Beta drafts were launched - you can lead a horse to water....

 

https://twitter.com/user/status/1297606404170231808

 

https://twitter.com/user/status/1297219592750690304

 

Jeez.

 

@dave30th I don’t know if you’ve had a reply from Dr Ghebreyesus but I wanted to bring this thread to your attention, and particularly the information that @Dx Revision Watch has shared about attempts by different orgs to communicate with WHO in recent years.

[Edit: link removed from my original post as thread has now been split. This new thread is what I was wanted to draw your attention to.]

https://twitter.com/user/status/1297724350192218112

https://twitter.com/user/status/1297726769533825029

 

NB: The link in Robert's post won't point now that the thread has been split to create this new thread.

I'd just like to clarify that communication with the WHO and with ICD Revision specifically around ICD-11 classification and coding has been undertaken via the Proposal Mechanism platform (which is the official channel of communication for ICD-11) and directly with the following WHO and ICD Revision personnel:

Dr John Grove (former Director of the Department of Information, Evidence and Research; currently Director of Quality Assurance for Norms and Standards),
Dr Robert Jakob (Team leader for Classifications Terminologies and Standards),
Dr Shekhar Saxena (Director of the Department of Mental Health and Substance Abuse), *See edit
Dr Tarun Dua (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 Geoffrey Reed (Senior Project lead, Revision of Mental and behavioural disorders),
Dr Christopher Chute (Co-chair, WHO Medical Scientific Advisory Committee (MSAC)),
The co-chairs and members of the now stood down ICD-11 MMS Joint Task Force
Anneke Schmider (former WHO Technical Officer, ICD Revision Project Manager).

These engagements over a number of years should not be conflated with approaches by the IAFME (May 12, 2018 Letter to Dr Dr Tedros Adhanom Ghebreyesus, World Health Organisation) and the European alliance for ME around ME, CFS generally, in the context of the WHO, the WHO-FIC and WHO Member States.


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.

 

Agree. I would be v uncomfortable with WHO engaging with MEAction for the reasons you have given.

 

I find this is made more easy when working for a huge behemoth organization. These people work everyday in the shadows in the sense that they are not well known or often in the news. And they wield a great deal of power on some specific public areas.

So, here's a little on Dr John Grove:

https://globalhealth.washington.edu/faculty/john-grove

Dr Robert Jakob:

https://www.researchgate.net/profile/Robert_Jakob2

Really limited info on either person. I expect few people not directly involved in some way with WHO give much thought as to what goes on and whether they are doing their jobs.

 

Another problem with the WHO is that it is not subject to any equivalent of a Freedom of Information Act.

It has an enquiries facility which is another black hole. A couple of years ago, after not getting a response from one particular WHO project lead concerning a specific ICD-11 derivative publication, I submitted my queries via the WHO's enquiry system. No receipt was sent out and no response was forthcoming, either.


https://www.who.int/docs/default-source/documents/about-us/infodisclosurepolicy.pdf

WHO Information Disclosure Policy

"1. The World Health Organization (WHO) is committed to making information about its activities available to the public. WHO considers public access to information a key component of effective engagement with all stakeholders, including WHO’s Member States and the public, in the fulfilment of its mandate. Public access to WHO information facilitates transparency and accountability and enhances trust in WHO’s activities to further public health..."


Which is a joke, given how they had obscured the G93.3 legacy terms for nearly 4 years before finally returning them to the public version of the Beta draft in response to being pressured for months for transparency around working group proposals.

On Friday, June 19, 2015, Anneke Schmider (former WHO Technical Officer, ICD Revision Project Manager) facilitated a conference call with myself and Dr Robert Jakob (former member of the now stood down ICD Revision Steering Group). During this call, Dr Jakob had assured me that working group proposals would be posted before the end of that year - he even quipped it would be a "Christmas present" for me. (Remember that the working groups had been operative since mid 2008.)

But the three terms weren't restored to the public version of the Beta draft until March 2017 - one day before I'd finished uploading the Chapman & Dimmock proposal submission. Dr Jakob was aware that I was in the process of drafting a not yet live submission as he left a comment on it directing me to the restoration of the three terms. So I'd had to wait nearly another two years for my "Christmas present" and it was accompanied by a note saying that the terms had been restored to their original listing in the classification while a literature review was being carried out - that took a further 20 months.

Dr Jakob and Anneke Schmider had been provided with comprehensive literature resources by Chapman & Dimmock in May 2015 for their information and for forwarding on to TAG Neurology and it was the TAG groups that had been tasked with undertaking literature reviews where categories might be potential candidates for revision. So there they were, in 2017 - 10 years after the launch of the revision process - still carrying out literature reviews.

Like wading through treacle.

 

Putting a spotlight on these people and letting them know many others are watching (esp now with covid) might be a small start toward melting the glacier of bureaucracy in the direction of actually performing their appointed duties.

Even if we can't do much else we can be aware and vigilant keeping a watchful eye by way of spotlight and pointing out the do nothing attitudes that hide behind large organisations.

 

Yup. One of the things that was missing when the 80's opportunity came along was accountability. It was done entirely behind closed doors, nobody paid attention to it or expected it to be anything other confirming mass hysteria. There was some attention but the expectation was set in advance and so nobody cared when the patients objected, they seemed small in numbers anyway. Not this time.

Even if they badly screw it up again, put eyes on it, spread the word, hold them accountable, make it visible. We can do our part, the long Covid community can do their part. What matters is that they can't just bury it and wait for people to stop caring.

 

Dr Grove is now Director of Quality Assurance for Norms and Standards, WHO.


This is an archive document, as the Revision Steering Group was sunsetted in October 2016, but it has a short bio on Dr Robert Jakob on page 6:

https://www.who.int/classifications/icd/RSG Biographies.pdf

WHO

Members of the Revision Steering Group

Dr Robert Jakob (page 6)


Dr Christopher Chute (page 2) who had chaired the Revision Steering Group and now co-chairs the WHO's Medical Scientific Advisory Committee (MSAC) was formally with Mayo but is currently Bloomberg Distinguished Professor at Johns Hopkins University.


It was Dr Chute who emailed me in early 2017 (after the co-chairs of the ICD-11 MMS Task Force had failed to respond to two requests from me, supported by some international advocacy orgs, that the proposals of TAG Neurology should be made transparent and posted on the Beta platform for stakeholder scrutiny and comment) and advised that his understanding was that the TAG group wanted to relocate some of the three legacy terms to the Index (likely PVFS and BME) and that I should get a proposal in myself. (Mary Dimmock and I were already planning a proposal and rationale which we submitted in March 2017, the day after the three terms were restored to the public version of the Beta draft.)

 

Personally, I don't think @Simon M should be wary to do what he can to get any personal influence he can manage... I realise that might not be his priority right now, but I doubt we'd end up with anyone better to speak to those at the WHO!