AFME decide Geneva is where their #millionsmissing contribution should be

idk any details. parts of WHO and UN are very much worth engaging with. we have not explored enough of this to my knowledge. but i don't trust afme. [i refuse for us to assume an entity turned over a new leaf before having seen what was underneath the old leaf and what is underneath the new leaf.] there were caa-cdc collusions that occurred without telling us. even an ok job could make the UN think afme are the charity to consult with.

 

I remember this as being a restriction on advocacy that could be construed as being political within a cetain proximity to a general election (6months?) 38 degrees were campaigning strongly about this law change. I think it went through. All afair. Sorry this is a fuzzy reply but I really don't have it in me to check properly. There's nothing in UK law to prevent a charity campaigning about/to influence government policy otherwise afaik

 

From OP
"
We are aiming to have contributions from people affected by M.E. all over the world, to demonstrate the need for urgent action on a global scale – which is why we are holding this event in Geneva, the location of the United Nations headquarters and its global public health body, the World Health Organisation (WHO).

We want the WHO and its Member States to recognise M.E. as a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and co-ordinated public health response to M.E."

They also say they will be working with other ME organisations but don't say which ones (apart from #MEAction, who I am surprised have agreed to this).

I just think it's a bit rich to try and get other countries to do what they (AfME) have been unable to achieve here largely due to their own mis-guided actions/inactions.

 

Is it anything to do with CEO of Swiss Health Insurance Company Michael Sharpe? Please correct me if I'm wrong but have read that is the position he now holds. I'm now wondering if it was Peter White after he retired. Does anyone know and what significance it may have please?

 

I'm on the management committee of a charity. Basically, you can't be partisan. You can't tell people to vote Labour or Conservative, or seem to back one side over another, but you can still lobby for change. Otherwise, most charities would be useless (which they are, of course).

 

Apologies. It should have been CMO for Swiss Re. Eyes and brain don't always connect, but I wonder if there is still influence there. I hope AfME are now doing the right thing. Worries me that other charities are not available to view or have comments.

 

Not Sharpe, but White was classed as CMO by Swiss Re for a conference last year.

 

Thanks everyone, I have not been well lately so difficult to keep posting but often want to try. It's good to read all your posts and keep up with what is happening.

Thank you all for your insights and generally keeping us all informed.

 

Invest in ME is a small charity that mainly runs the annual International Research Conference in London. Richard and Pia have two "children" - with ME and their Chair has ME herself. Jo Best posts on here on their behalf. They do not have members as such.
So I do not know whether any of their organisers would be able to come.

 

At the AGM of AfME, they said that when they get a significant legacy donation they try and use it for a specific project that they would not be otherwise able to fund and had decided to fund this advocacy project via an organisation in Geneva.

I think their members and the rest of the ME Community will be interested to know the amount spent on any fares from UK or other expenses this incurs.

 

Well, we are at crossroads now, If ME plp don’t go and they are controlling whatever agenda they have, then nothing we can do afterwards.
If we split, we loose impact hmmm

 

She got ME just after a fever
But her doctor just didn't believe her
She tried a UK charity
Called Action for ME
But found they'd all gone to Geneva

eta: boom boom

 

Although AfME say they are 'supporting' #MillionsMissing, apart from their 'contribution' in Geneva they have hardly mentioned it on Twitter or Facebook and have not mentioned at all the #MillionsMissing protest in Bristol. Anyone on twitter or FB care to rectify the omission?

https://www.facebook.com/millionsmissingbristol/

 

Hi @WillowJ

This requires some clarifications; and in the case of the G93.3 terms and WHO's position on these terms, I include an important caveat for ICD-11:


It wasn't the NHS, per se, that was forced to print errata slips.

It was a UK Collaborating Center (Institute of Psychiatry) in relation to the publishers of this publication:

WHO Guide to Mental and Neurological Health in Primary Care


which was not an official WHO publication but an adaptation from a WHO publication for which WHO permits country adaptations:

Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version

Editorial Board:
Rachel Jenkins, Charles Warlow, Barry Lewis, Albert Persaud, Debbie Sharp, Eric Taylor, Jim Thompson, Andre Tylee, Nigel Wellman and Edzard Ernst

Overall direction of the project by Rachel Jenkins

World Health Organization Collaborating Centre for Research and Training for Mental Health

Publication information:

http://www.mentalneurologicalprimarycare.org/publication.html



IoP tried it on again, some years later, as reported on my ME agenda website, in 2009:

https://meagenda.wordpress.com/2009...-neurological-health-in-primary-care-website/

Amendments to the WHO Guide to Mental and Neurological Health in Primary Care website

I sorted this with Rachel Jenkins.

For ICD-10, yes.

For ICD-11, this is the current status of proposals for the G93.3 legacy terms:

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf


See also my dedicated thread on ICD-11 updates:

https://www.s4me.info/threads/updat...-classification-and-terminology-systems.3912/

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

 

If I may be forgiven for taking the thread off topic a little...

Some additional information for @WillowJ

The Institute of Psychiatry (a WHO Collaborating Centre) is heavily invested in the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version.

Aka ICD-10 PC; ICD-10 PHC; ICD-10-PHC; the ICD-10 "Primary Care" version of Chapter V.

This is the 1996 WHO non mandatory diagnostic guideline from which the Jenkins group had adapted the UK publication that had required errata slips to be inserted, around 16 years ago.

This diagnostic and management guideline had been the baby of Prof, Sir David Goldberg, now professor emeritus of the Institute of Psychiatry. Published in 1996, it had been aimed at primary care use and for use in low- to middle-income countries; for use in training, education and in low resource settings by often non clinically trained health workers, with no access to psychiatric professionals or where use of the full ICD-10 would not be practical.

It contained just 25 "common mental disorders" and no other disorders or diseases. It wasn't quite the success that Prof, Sir David Goldberg had hoped it would be.


The ICD-10 PHC is currently under revision for ICD-11 PHC.

Once again, Prof, Sir David Goldberg (now 84) has been given the task of overseeing the revision. The work group's Vice-chairs are Michael Klinkman (USA) and WHO's Dr Geoffrey Reed (also USA). Denmark's Marianne Rosendal is also a member of this 12 member working group.

(Klinkman and Rosendal are also members of the ICPC-2 revision committee.)


It is this external work group, known as the Primary Care Consultation Group (PCCG) that has been proposing, since around 2011, to replace the ICD-10 PHC diagnostic term F45 Unexplained somatic complaints, with a new proposed construct, "Bodily Stress Syndrome (BSS)."

Since no new progress papers have been published since last year in the name of the PCCG work group and since the full diagnostic guidance texts and the most currently proposed criteria texts are not available for public scrutiny and comment, it is currently unclear whether the group's most recent proposals are for a criteria set adapted from Fink et al (2010) Bodily distress syndrome, based on symptom clusters, or for a simpler criteria set based on symptom count, or for some other flavour of BSS/BDS.

At least one of the field trials for the BSS construct have been part funded by the Institute of Psychiatry.

The PCCG has been operative since around 2010 and has published several progress papers, commentaries, a field trial protocol document and a slide presentation (the slide presentation and other information on BSS was provided to the Countess of Mar in October 2017).

The ICD-11 PHC is planned to include 27 mental health disorders, two of which don't have corresponding disorder categories in the core ICD-11.


For clarity: the construct that is being progressed for the ICD-11 core edition is "Bodily distress disorder (BDD)" - an SSD-like construct, which is differently characterized, has very different criteria (based on excessive psychobehavioral responses, rather than on symptom counts or symptom clusters from body systems) and which captures a different patient set to that captured by the BSS construct.

BDD is the only construct that has been under consideration for the core ICD-11 edition since it was first entered into the Beta draft in early 2012. It is not the case that WHO/ICD Revision is undecided about which construct it will progress for the core ICD-11 edition.

BDD was also added to SNOMED CT in July 2017 by the SNOMED CT/ICD-11 Mapping Project team as an "exact match" for ICD-11's core BDD concept term.


For those struggling to differentiate between the various ICD editions and publications here is a document that compares their intended purpose, in which countries they are used, and whether they are mandatory for use by WHO Member States or not:

https://dxrevisionwatch.files.wordp...fication-and-terminology-systems-may-2018.pdf

Comparison of Classification and Terminology Systems May 2018

This document is provided by Mary Dimmock and Suzy Chapman (DxRevisionWatch.com) to assist stakeholders in navigating the complexities of the disease classification and terminology systems.