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Thank you, @Simon M!! Interesting. My question is similar to @Andy's. How will they confirm that the 20,000 people all have ME? In the US, CDC has piloted a survey, called the "Behavioral Risk Factor Surveillance System that used a patient report of a diagnosis of CFS by the doctor. The pilot...

Thanks, @mango!

This looks very interesting. Would love to read the whole thing. I may have missed it but is there an English translation of the full report? Google translate doesnt deal with a file this big

Just to clarify - this is the notice that a proposed change to a) adopt Fukuda as diagnostic criteria for CFS and b) change the name to "SEID/CFS" has been rejected by the Veterans' Administration. The proposed change was not for the ICD-10-CM but for a system used by the US Veterans'...

A few clinical guidance providers initially used the name "CFS/SEID" when the IOM report came out but have since changed to ME/CFS. The VA recently used the name "SEID/CFS" in a rule change they were proposing (which also proposed using Fukuda) but I will be surprised if its accepted. And it...

I'd have to dig up the source but I've read that the rate of depression is not greater in ME than in other chronic diseases.

I agree with @Inara's point that "Mild" in ME is not mild as most would understand it. Most/all of the definitions require a substantial reduction in function which reinforces that point Leaving aside the issue of the label used for "mild" for the moment, I'd be interested in what you think of...

Would that study - of CBT and GET to convince patients they are not ill and should ignore symptoms when they exercise - be ethical in people with ME?

Just wow on the idea that calling for minorities to be included in ME research is grievance/identify politics - particularly for a disease that's been branded as a condition of pampered white women. Jason's research highlighted the lack of minority representation as did the IOM. No more to say...

I appreciate that unknown factors can contribute to improvement following treatment and that we dont have a handle on the complexity of this disease. But in the patient I mentioned, the only change in treatment at the time was Rituxan, the degree of improvement was much greater than this patient...

Intriguing question. I know a Giardia ME patient who had a positive response to Rituxan. Measures of improvement included change in total fitbit activity and also hours of upright activity in a day and on subsequent days as well as patient reported improvement in sleep quality. Cognitive...

thanks @AndyPandy

@sea or @AndyPandy - Do you happen to know what challenges he has faced with finding a doc to take it on? In the US, one big issue, aside from the attitudinal issue, is the lack of insurance reimbursement for the time it takes to manage an ME patient.

Yes, I saw this too. I know Klimas has tried multiple times to get government funding for a trial on another drug. I believe this is private funding and she now has funding from the dept of defense for GWI

@RoseE - that committee went away when CFSAC was disbanded. But the clinicians at the US MECFS Clinician Summit/Coalition have been discussing it and US advocates pushed for funding for it on Lobby Day last week

If I understand, the concerns included that the DSQ PEM questions used did not cover the breadth of the experience of PEM and people wanted a questionnaire that came up with a yes/no without a clinician having to make a judgement. The process used a two step process to ensure that situations...

@Michiel Tack - Nice job laying those out. A few thoughts - hopefully not redundant with what you wrote and/or dumb ideas as I am writing when I should be sleeping.... 1) absolutely agree with the need for RFAs. Might be useful to call out specific types of RFAs that should be included - IMO, I...

The clinicians have identified multiple opportunities for treatment trials based on treatments they are already using. But depending on the drug, the trials would have varying levels of complexity and cost, even when the drug is already approved for another indication. LDN has been reported to...

CDC's statement is completely inadequate, especially since their previous recommendations for CBT and GET were explicitly supported with PACE and other studies as references and used language that could have reinforced the biopsychosocial view of the disease. For instance, CDC had a CME in...

CDC has not given any reason for disappearing the terms - only AHRQ did and then only because of Oxford. But that's not tantamount to saying that CBT and GET are suitable for chronic fatigue. GET is not recommended for any other disease here and the ME/CFS recommendations on the CDC website are...