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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 criteria in the article don't seem to follow the ped. primer, the IOM report or the CCC which I find confusing. (Another grumble from me-Both the podcast...

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.) Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in...

There is a podcast that goes with the article. http://sagenursing.sage-publications.libsynpro.com/nasn-november-2018-podcast-school-nurses-can-improve-the-lives-of-students-with-myalgic-encephalomyelitischronic-fatigue-syndrome

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 feels vague overall and the text seems sparse re onset of cognitive issues as an indicator of ME. (I have quibbles with language usage in the paper...

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 with, share with and support other caregivers. Sunday, 30 September 2018 at 4:00 PM EDT During our Sept call, let’s discuss tips and thoughts about how...

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 project. I also see that Rowe's work on manual therapy is referenced.

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 IACFSME and pediatric primers) that treatments (symptom treatments) in ME are based on decades of clinical experience. And that this clinical...

@Esther12 -As ingenious as this is, if they spent that ingenuity on genuinely helping us in an open, transparent, collaborative manner, we'd get further, faster.

@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 paused/stopped. (Deadline Friday of this week!)

@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 sometimes fail(same patient)is the Hoffman.

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 interesting to see how people with OI but without ME do on the 2-day CPET - especially since some clinicians think OI includes PEM (I do not know how...

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 warning and recall about two thyroid medications made by a Chinese manufacturer. The FDA has issued a voluntary recall for the medications because...