I am in favor of managing symptoms as soon as they are seen, but not sure about dx'ing at 4 months (or 3 as mentioned in the podcast). The dx...
Kathy Rowe published an article about IVIG in ME(1997). (I don't see it in the references of this review which is why I am pointing to it here.)...
There is a podcast that goes with the article....
I feel the paper tries to do several things - talk about nurses helping direct one to an early diagnosis and longer term support. But to me it...
I hope that there is a study soon to replicate this and that there is an examination of other illness groups (in addition to ME and healthy controls).
ME Caregiver Support Call (September) We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us to connect...
Thanks for posting this @Sly Saint . I haven't had a chance to read it yet but I notice Elisa Oltra is one of the authors. She was on the NIH CDE...
Hmmmm - not stakeholder involvement...
Merged thread https://www.hhs.gov/ash/advisory-committees/cfsac/index.html
@Dolphin - Interesting...... Thanks for posting this!
Scientists have my trust when they do solid science. PACE etc is not solid science - so it doesn't have my trust.
(Caution - attitude) The scientific evidence and the publication of it, like the retrovirus', are in hiding. Only discernible to those "in the know".
The webpage says it is an MEAction Campaign and from what I understand it is an MEAction petition.
I don't see the petition as calling for unevidenced treatments to be included but rather as saying that ME specialists have acknowledged (in the...
@Esther12 -As ingenious as this is, if they spent that ingenuity on genuinely helping us in an open, transparent, collaborative manner, we'd get...
@Wonko- the goal changes as the number of signers increases. One of the concerns is the very short amount of time to get this project...
@Esther12 - I am unclear what you are referring to re [ETA] "I'm surprised we're only just hearing about this now."
Tandem Romberg is one of the neurological tests in the NIH Common Data Elements. Another neurological test that patients sometimes pass and...
I don't know of a comparison of people with ME w/POTS(other forms of OI) and people with ME who do not have any form of OI. It'd also be...
Recall Alert: FDA Warning About Two Thyroid Medications August 15, 2018 at 1:00 pm PITTSBURGH (KDKA) — The Food and Drug Administration has a new...
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