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Thank you for bringing the FND to our attention. There is a great deal of confusion about what FND means and how it is used. This reinforces concerns many of us have after seeing this used in the US for people who previously had a CFS diagnosis. It is presented as a "real disease" but the...

I see there is inclusion of the term Post-exertional neuroimmune exhaustion. The meaning for this term is in the International Consensus Criteria "Post- Exertional Neuroimmune Exhaustion (PENE pen׳-e) Normal fatigue is proportional to the intensity and duration of activity, followed by a quick...

Dx Revision Watch - Thank you for bringing the update to our attention. This is an opportunity to re-educate doctors that these three different labels have different diagnostic criteria. Someone with CFS-Fukuda who doesn't have PEM requires a very different medical approach than someone who...

Please note the following clarifications 1. The part of the submission you refer to about those who fit the ME/CFS criteria need to be thoroughly screened is based on the expert guidance in the #MEICPrimer. "Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be...

I understand the IOM report was the government's response to come up with better criteria. IMO the International Consensus Criteria already accomplished that in 2011 and I am glad to see more and more researchers and nonprofits/charities recognizing the value of what the ICC and the #MEICPrimer...

I absolutely agree that there is a case for ME described by Ramsay not being identical to the ICC. Also agree that other criteria are not identical either. I think that is the point of not lumping all under a new ICD code. We have some good papers out by Jason & Twisk as well as this paper...

This is very confusing. I concur that CFS when it is synonymous with ME would make sense for them to have the same code. But, in the US the CFS-Fukuda definition diverted the US medical community AWAY from ME giving us a distinct different description that is not ME. That led to CFS & ME...

I think Dx Revision watch has covered a lot of what I would have said. Key points 1. You are right there has been very little debate on this as this was not made public until right before the meeting. Repeated requests over the years to deal with the ICD codes has too often left out views of...

ME International's response to the proposed change to the ICD codes is as follows: (I am a board member at ME International & participated in writing this response.) ME International’s response to a request for input regarding the proposal to make changes to Postviral Fatigue Syndromes (G93.3)...

In your opinion, what AS locations would be other options. Is there a place for text for myalgic encephalomyelitis or is it attached to the CFS text?

I was involved in writing his blog and it is based on input from multiple sources. I will be working with others at ME International to submit comments regarding concerns about the proposal. I think a point that is being missed is that many of us have worked very hard to get the G93.3 code...

DX Revision watch - From earlier comment"...The request was referred for consideration to SNOMED International's terminology team who agreed that since the term has not been added to the U.S.'s ICD-10-CM by NCHS/CDC or adopted by any of the sponsor agencies of the IOM Panel's Report, it would be...

I would be horrified if a researcher is indicating they would use the IOM for patient selection. Even the IOM stated it wasn't meant for research. Personally if I was diagnosed using the IOM criteria, I would want to follow-up to see if I fit the ICC. The more I know about about my personal...

Apologies that this is longer than I hoped and may have fallen into rant territory. I appreciate those who bear with my attempt to be coherent. I see where you are going with this argument. But I see it differently. From my point of view and experience of 30 years, I have witnessed many...

I appreciate you recognize that for those of us sick longer this has had a deep impact. 30 years last August... I have good reason to be fed up with the name.

Thank you for replying. It sounds like you use ME/CFS as ME & CFS. I would agree that is a viable approach as it does indicate there is a distinct disease ME. Clarity in the context I used it was making sure ME/CFS was clarified. It is clear that much of the research (at least prior) to 2015...

I hear what you are saying and realize your perspective is from the UK. Part of what I was trying to explain in my comment is that while it may not matter to those who are in the UK which criteria or description is used it absolutely impacts the medical care I can get here in the US. I keep...

This is an important discussion to have but there are some points I think need to be taken into account. 1. ME/CFS has three different meanings and it is difficult to know without asking which meaning is being used. ME/CFS: ME & CFS as two different conditions (I have asked around and was...

I'm still struggling to understand your position about the ICC when so many researchers are using it. All of these studies listed below used ICC criteria for selection of participants. What I'm hearing you say is that all of this research and researchers are fringe and should be ignored...

We do see PEM referenced in other disorders - including Fibromyalgia (fibro crash) as well as cancer related fatigue. See chart here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2390812/. This confusion in the medical community when bringing up PEM is why I prefer to clarify my experience more...