3 authors are Canadian patient partners including @ScottTriGuy, Sabrina Poirier and Christiane Garcia. Congratulations to all!
Someone does not understand that POTS is one of a feature of ME
So 1 out of 4 people from the NIH study gets a different diagnosis than ME. It is a high percentage to me, considering that they are pre-screening...
I very much believe that by doing a proper (deep) work up of each and every patient who fails to recover after a couple of years into ‘ME’, we’d...
@alktipping when you say many PWME have ‘dental problems’, it is a very general claim. I wonder whether it has been scientifically documented. Do...
I guess those of us without in-laws are in the clear :rolleyes:
Research priorities, in my mind would be towards 1) a biomarker. stratification, subsets 2) Longitudinal studies- study patients over time- not...
I’d happily be a guinea pig for F & M and submit to clinical trials. Compared to being offered brain retraining/ brainwashing therapy, this is an...
my bullshit meter just went up the roof :banghead:
Simply that deconditioning is such a slam-dunk concept. It agrees with what they learned in med school and is gets the patient circulating out of...
60% drop out and they still feel that their GET program is successful? Where has good science gone?
One would wonder whether it elicits a placebo response, followed eventually by a crash. A follow up over time would tell us more.
I am so very sorry @DigitalDrifter it sounds horrible. People turning to fringe practitioners has been problematic for our disease. It has meant...
Your ideas are logical, but there seems to be a horrible consequence in where we do nothing because we do not understand the disease, and we do...
Delay tactics, smoke and mirrors, world wide press releases, those are just some pieces of a nasty puzzle. It doesn’t look like honest science.
I mostly agree with you, but in terms of rating evidence, the local program has A-evidence for CBT and recommends tai chi and yoga. We have no...
Well, that’s interesting. Thank you for sharing. It is getting me curious. I assure you i have plenty of experience! I accept that you have yours!
That would need to be tested in research. I believe that women fall for it more then men and in fact it has been my experience (professional and...
Target the women first, because they are more gullible to alternative therapies and more accepting of the BPS BS. :rolleyes: Let’s try the same...
I could still vote.
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