WHO ME/CFS coding - April to May 2018

Patient letter writing campaigns are anathema to WHO/ICD Revision, likewise petitions. Any approaches to WHO/ICD Revision will be directed to the mechanism for comment or requests for changes - ie the ICD-11 Beta draft Proposal Mechanism.

I cannot advise you on what plans or strategies Forward-ME might be considering, either in relation to their existing dialogues with WHO/ICD Revision or in relation to any dialogues with other parties that they may be considering attempting to initiate, in the future.

I was in any case dismissed, this afternoon, as an adviser to Forward-ME on matters relating to ICD-11, SNOMED CT and other classification and terminology systems.

 

Did you wish it or why were you dismissed? Not good if you didn't wish it...very worrying.

 

I have been dismissed, and dismissed in front of 20 other recipients including two clinicians to whom I am known and at least one Member of Parliament.

The Countess of Mar's communication has the Parliamentary footer on it that includes "Any unauthorised use, disclosure, or copying is not permitted."

I am not at liberty to discuss.

But the Countess of Mar is a politician and this decision to terminate my services as an external adviser to Forward-ME is political.

 

WHAT? After all your hard work and input? I was worried before, but now..... can you, are you prepared to say why?

I have a horrible feeling we're being sold down the river here.

 

I can't believe this. I am so sorry and shocked. This is bad news indeed!

Me too!

 

The King is dead, long live the king?

 

Given the lack of nous from Forward ME and the charities in getting to grips with the nature and implications of recoding , i have real concerns that there is noone to jump up and down for us, and the horrendous fiasco that Bob suffered, and its consequences will become commonplace.

What is being done ?

 

I see, thanks for responding and I can see why this is the case.

I too am concerned that you will no longer be advising Forward-ME.

Thank you for your work @Dx Revision Watch

 

The email I have received today would fill three quarters of an A4 page if it had been composed in 12pt. If I were to paraphrase its content I would wish to counter a number of the statements made within it and I am not prepared to do that publicly.

 

About which codes in particular?

I ask, because there are issues with all of the following. So I can't set out what is being done without knowing which specific codes you are asking about.

1 PVFS, BME and CFS for the core edition of ICD-11 - decisions on hold pending an evidence review, but the following statements have been made:


2 BDD (Mental, behavioural and neurocognitive disorders chapter) which has been proposed since February 2012 and which is going forward to the core edition of ICD-11 that is scheduled for release in June. (No public platform for review and comment of the full disorder description/ characteristics texts, but available for review by registered clinicians.)

(BDD was also included in SNOMED CT for the July 2017 release.)

3 The proposed BSS construct for the 27 mental disorder "Primary Care" publication "ICD-11-PHC". (No public platform for review and comment of the full disorder description/characteristics, most recent proposals for characteristics/criteria).

4 CFS and its Synonym terms in SNOMED CT.

5 The forthcoming revision of the ICPC-2 for ICPC-3.

 

@Dx Revision Watch I am shocked and saddened by this

 

@Dx Revision Watch -Are you able to tell us @Charles Shepherd/ MEA's position on this? Is this a Cof M(chair) decision or that of the committee?


ETA- @Dx Revision Watch added

 

Sorry @Dx Revision Watch if I put you on the spot. I was so shocked at the news I completely failed to see your post stating you couldn't discuss it.

Thank you so much for all the hard work you out into this. If it wasn't for you, I would be completely unaware of what was coming .......

Yes, @Russell Fleming , I too would like some input from the MEA on this.

 

Very sorry to hear this news @Dx Revision Watch - your expert opinion should be listened to, and I’m sorry that it hasn’t been/won’t be by this group.
Thank you for keeping us updated here.

 

Forward-ME has no formal constitution. Its linked organizations are listed here http://www.forward-me.org.uk/LinkedOrganisations.htm

Its "PRINCIPLES OF WORKING" are: "We seek to maximise consensus but respect those who have differing views. Members are free to opt in or out of specific group activities."


The letter I received, yesterday, had been CCd to 21 individuals, including Dr Diane O'Leary, Carol Monaghan MP, Dr William Weir and Dr Nigel Speight. It is signed "Yours sincerely Mar Chairman, Forward-ME."

The letter does not clarify whether the decision to dispense with my services as an external adviser and the text of the letter had been discussed with the member organizations prior to sending; whether it was a consensus decision; whether some orgs were not willing to sign up to it, and if so, which orgs opted out, or whether this was a decision taken by the Chair, herself.

I suspect the latter.

I shall probably establish, later today, whether any members of Forward-ME were aware that this decision had been made and whether they had had sight of the letter's content and an opportunity to review and comment on its content before it was sent.

 

Was I hallucinating yesterday when I imagined I saw another thread on a related subject, but of which there is now no sign.

If the removal was at the request of the original poster, having had second thoughts, that would be absolutely fine. The only concern would be if there were some degree of duress, which might cause us to wholly reevaluate the other party involved.

EDIT posted before seeing the above post.

 

Can you recall the thread title, Chris?

 

I must have been confused. A touch of the sun. Sorry about that.

I am very sorry to see the way matters have unfolded, after all your work, on this subject which will be beyond the current reading endurance of most of us.

One understands that tensions and disagreements will always arise within groups of people, but it seems incomprehensible to seek to resolve matters in this manner, at a time when a very particular set of skills are needed.

I think we will all be watching this matter with the greatest interest and hoping you will continue to inform us if there are matters which you would like to disclose but are constrained from doing so.

There will be support here for your work, whether or not it is appreciated elsewhere.

 

Thank you Chris, I appreciate your support. It was a particularly nasty letter and it's important to establish whether the org reps had been given any opportunity to review and comment on it, before it was sent.