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That was exactly my reaction. Objective measures, use of Oxford, flawed disease theory, etc.

Just to clarify - would you also say this about the criteria established in UK's 2021 NICE guidelines? And if so, does that mean the following sentence from the submission should be revised - as in red - to include NICE's criteria? Those who fit the ME/CFS criteria as defined in either the...

Has anyone looked at this document? If so, what did you think about this overall? And also re the discussion on cognitive issues. Quite an emphasis on non-specific factors that support the psychosocial interpretations doctors are telling Long COVID patients. While the outcomes literature...

Yes, it is similar. Less than 2 dozen docs for the entire country. In addition to the expense, waiting lists are long (can be years), and patients would typically have to fly to go see them - if they even know those doctors exist. So the vast majority of patients are being seen by their local GPs.

Worth noting a few of the objections being voiced... ME-International's proposal/comment calls for a) ME to only be diagnosed using the ME-ICC and b) the term CFS to be left in the symptoms chapter at R53.82 where it's equated to "chronic fatigue, unspecified." Then, if patients meet the IOM...

The multiple communications on this were very clear - the orgs proposal was primarily about getting ME/CFS added and changing the lead term to accommodate non-viral triggers. We then acknowledged that NCHS had added other recommendations onto the final option discussed. We also acknowledged that...

[Edited to add: I am speaking on my own behalf and not as a spokesman for the US orgs that submitted this proposal.] Wow - lots of discussion on this. Bottom line for me - the US ICD-10-CM is such a mess that there is no clean way to fix it that everyone will agree to. But it needs to be fixed...

Some context for those planning on submitting comments on the proposal for the US version of the ICD-10... Bottom line: US patients with ME/CFS are invisible in the electronic records used in disease tracking and research because they are coded in ICD-10-CM as having the symptom of unspecified...

Do you mean Arthur Kleinman from Harvard or someone else?

not sure what they are using but this is one method that's available clinically in the US - the indicator tracer dilution technique. https://www.daxor.com/how-bva-100-works/ A dose of tracer is injected intravascularly. Once the tracer has fully circulated in the bloodstream, a series of...

Good list. Thank you for doing this, @Michiel Tack Some food for thought... Consider adding that patients should be involved in the strategy/priority setting before specific projects are selected. That will help drive the overall research agenda to focus on what matters the most to patients...

@Dolphin - thanks for the comment. I agree we absolutely need clinical trials. But getting what we need takes money, an engaged medical community and academic centers, and to really scale up, pharma. NIH has previously said they require the mechanisms and subtypes to be defined before they...

Member states may implement ICD-11 and any country specific versions at different times. We don't have a date by which the US will fully implement ICD-11 and any US specific version. But the US did not implement its version of ICD-10 (the ICD-10-CM) for electronic health records until 2015 -...

Exactly! Whether it was purposeful or just neglectful, this is exactly the situation in the US. At the IACFS/ME conference, CDC reported that they were unable to identify ME/CFS in US electronic health records using ICD codes alone. It required a manual chart review which is expensive and time...

My bolding added to the above As WHO notes above, ICD codes are codes for diseases (and other health problems). The terms in the ICD are the names of those diseases, not just meaningless terms with no relation to a disease. So WHO must take account what diseases these terms refer to. While...

ICD-10 may be frozen but ICD-10-CM, used in the US, is not frozen. Changes are still being made to it. Regarding the term ME/CFS - yes, WHO does not provide criteria for ME or CFS. But as used in the Canadian Consensus criteria and the IOM criteria, the term ME/CFS is clearly not simply a...

Responding to the point made about the request to add ME/CFS to the ICD-10-CM The term ME/CFS, as used in the Canadian Consensus Criteria, the IOM criteria, and the IOM report is not just a joining of two existing discrete ICD entity terms. Both of these criteria require PEM, not required by...

Thanks for sharing that @Mij. that was helpful.

Please don't take this as arguing against the point that you are making. I'm just trying to understand what symptoms or test results did you experienced/had in those 10 years pre-PEM that indicated you had ME? I'm trying to understand how we would diagnose ME in the stage before PEM develops...

Thank you for posting, Susie. The proposal submitted by the seven organizations does not include a recommendation to add the term SEID. The submitted proposal does request the removal of the word "benign" from the term "myalgic encephalomyelitis," the revision of exclusions as needed to...