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https://www.meadvocacy.org/seid_classification_usurping_me_must_be_stopped Some information about submitting comments in this blog.

This proposal operationalizes SEID name and criteria in a way that will affect patients the same way Fukuda did. I realize many think this is better than Fukuda. Better by inches is not good enough to actually get the proper care we need. As a patient who has been dealing with doctors for...

I agree. That was a deeply upsetting statement as it clearly gives those outside of the community the wrong understanding. There is NOTHING vigorous about research into CFS. However, there is a great deal of understanding about ME as per the ICC. Anyone who spends time using the ICC and the...

I was unaware that they changed something after it was signed. That makes me very uncomfortable. Does anyone have a "before and after" version to show what was changed?? I don't see an item #6.

Asking for proper treatments that have evidence based studies always leads to what disease are we talking about? If it is CFS that is diagnosed with Fukuda with patients who DON'T have PEM (or PENE), then we are still looking at CBT and GET as viable treatments. If we are looking at ME...

Patient selection for this study? Does anyone have access to see how they chose those 5 patients?

Would probably be important to verify which of those in the study have the MTHFR gene mutation if this is affected by folate availability. If it is then the diet of the person could affect the outcome of the study.

I've heard two reasons. One is that not all the experts that signed had enough experience/confidence yet in the ICC so they chose the CCC to get wider acceptance. The second reason was that those who wrote the letter understood the CCC could be adopted since it had been put forth at CFSAC.

I couldn't agree more. It is becoming apparent this is going to be the future battle we face as long as the two diseases ME and CFS are mixed together. (IOM states these are two conditions that they combined for their report). I would put forth that ME as per Ramsay and the ICC descriptions...

Not sure where you are located but in the US insurance won't cover tests that aren't attached to the code used. Currently the codes used in the US for CFS do not include these tests so we have a very hard time getting doctors to order them. By having the code of diagnosis attached to the...

Yes... you are right... that did come before Fukuda. But Fukuda being adopted is what led to there being an institutional bias in the US against ME patients. I got sick in 1989 - I was treated with respect and given antivirals into the 90s. I had a period of better health and didn't pay much...

I am in the US. So, yes, you are right we have expert doctors here (Montoya, Klimas, Enlander, etc.) who are doing treatments that are likely not readily available to many. Including those who don't have access to these expert doctors. Note - not usually covered by insurance so most patients...

When discussing any criteria, focus has been on getting diagnosed or selecting patients for research. What is repeatedly ignored is what is the end result for patients when any criteria are used. We’ve seen for over 20 years what treatment for those who were diagnosed with CFS and then ME/CFS...