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There were a fair few bps proponents before latest 3 new members.

Much of Action for ME’s comment on committee makeup is a whitewash to me: “Committee appointments NICE has made two rounds of announcements regarding appointments to the guideline committee, chaired by Dr Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester. The...

Sorry not replied yet to question to me up thread few days back from Andy. Pain bad, typing hard, briefly: 12 professionals on list now. Don’t know opinions of Chair and Vice Chair. Apart from Crouch (social worker) and Nacal who are biomedical supporters, I would say 6 definite bps, 1 v...

I know as yet the NICE guideline committee have of course not chosen a clinical criteria/definition (an existing one or perhaps develop their own version?) that they will include in the updated guidelines. However, I will say if they choose to follow the CDC and also choose the IOM SEID...

Even with the exclusion criteria, ME can be diagnosed whilst having treatment for other conditions that do not fully resolve with treatment or even a condition where there is no treatment. It depends on the clinical judgement of the doctor whether a patient's symptoms are primarily the result of...

If the SEID criteria do end up being used as research criteria as history tells us may well happen the SEID criteria are not specific enough. Others on here believe that probably will not happen. I do not share that confidence and IOM criteria are already being used for research. The ICC...

ME criteria with exclusionary criteria do not mean that those with both depression and ME cannot ultimately get both diagnoses and treatment for both if they are unlucky to have both and of course both should be treated. The exclusion for depression is for those who suffer from primary clinical...

Yes, that is true, so stand corrected on that. I need to check whether the IOM report said there was not sufficient evidence for definitively saying there was neurological involvement. Bateman in the US I believe is giving one of the NIH consortia groups, the Jackson lab, her patients and she...

I disagree with Jonathan Edwards that SEID getting its own code will not do harm. How can SEID be in the ICD CM in other disorders of the nervous system when the IOM said SEID showed no brain inflammation? Also the SEID criteria are only supposed to be only for clinical use, yet the history of...

The second screenshot of Dr Enlander’s comments on the problem of no exclusion criteria for SEID.

In my view the absence of exclusion criteria is a problem because the 4 self reported symptoms in the core criteria of SEID could happen in other conditions and are not unique to any identifiable disease, so mixed cohorts will happen again as happened with CFS Fukuda criteria. ME doctor, Dr...

Excellent comment @Colleen Steckel, thank you. Agree with all you have said. @Medfeb, I am saying IOM SEID criteria should not be used. I am one of those who does not support the IOM criteria. I know CDC have dropped the name SEID in their materials and now refer to the SEID criteria as...

I hear you but shouldn’t the ME community challenge medical education providers and some doctors doing this? Doctors should be encouraged to use the ME code in the ICD 10 CM. By SEID being given an ICD code this will just cement it further, risk it being used for research and once again ME is...

Ok, thank you Thank you for confirming the board will not be taking an official position on the proposed new code for SEID in the ICD 10 CM. As I have said previous on this thread, I think if it goes ahead this will sideline ME further so obviously I am disappointed s4me will not be taking an...

So @Andy, are you saying the s4me board do not think SEID getting its own code is something to be concerned about?

@Andy, does s4me have any position statement on the proposal to give SEID its own code in the ICD 10 CM?

To be clear As the research is building on showing neuro inflammation in ME, even if the studies arent large enough to definitively prove it yet, would this not also @JaimeS be another reason to not want SEID to get a separate ICD 10 CM code? As i said above, i think a SEID code will cement...

I personally think SEID getting a code would mean ME and its criteria will be further sidelined. CFS has been indexed in the alphabetical list to ME in ICD 9 and ICD 10 (not the American ICD CM). The outcome in my view certainly here in the UK is CFS has wrongly been conflated with ME and hardly...

I am talking about someone who was I believe on the MEGA PAG group. This person in my view certainly leans towards encompassing the bps lot whilst also supporting biomedical research and I personally wouldn’t want them speaking for me. Also a few MEGA PAG members resigned as they had big...

The patient reps to NICE 2007 were named, the patient reps to the 1998-2002 CMOs Working Group were named. If they have reason to use a pseudonym (an NHS doctor, a parent of a vulnerable child perhaps, or don’t want to identify as having ME), maybe, but no name, or pseudonym and no bio is not...