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.
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.
Maybe the WHO want to hear from the patients...
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.
