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I don't understand why Benadryl is included here as its main ingredient is NOT phenylephrine (supposedly a decongestant) - it is diphenhydramine HCl (an antihistamine and often used as a sleep aid in the US)

It feels like a cruel irony that NIH begins some meetings on disability research tomorrow https://dpcpsi.nih.gov/disabilityresearch/events

Some Long COVID clinics (US) are having people use this. They possibly suggest other devices also, this is one I know several people have been using. https://www.pnmedical.com/product/the-breather/

I think pharma grade means there are stricter standards than medical food grade. (But I am not a specialist in "FDA speak")

The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is "a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for...

The first author (Alan B. Cash) works for a company that produces oxaloacetate. (just pointing it out)

ME/cfs aka SEID, but diagnosis of exclusion, requiring 4 or more associations symptoms for at least 6 consecutive months ----- sounds more like Fukuda than the IOM dx criteria.... :banghead: (fwiw - someone by the name of Nupur Agrawal is at https://www.uclahealth.org/providers/nupur-agrawal in...

Maybe it's just me, but "arsenic walter" does not inspire any degree of confidence....

:laugh:Darn! I thought perhaps we could get the answers straight from the horse's mouth so to speak.

And, of course, in the years since then, there have been rigorous, replicated studies on the accuracy and validity of those tests in other people?

Wow! (said with some degree of sarcasm) This veterinarian says he has documented ME in animals. I haven't yet found (in the books.google link) where he explains how he documents PEM/PESE in animals....

" Affiliations MindBodyLab, University of Oslo EAPM European Association of Psychosomatic Medicine" The website is a whole lot of fantasy (and not the readable kind)....

Those with ME met either the ICC or Fukuda. Even though the abstract says "PEM is the key manifestation..." the article does not indicate that PEM was required of those selected. It would be interesting to know who the adjudicator was who verified diagnosis...

How does one evaluate a mouse for PEM?

“Pediatric Orthostatic Intolerance: A Focus on Management,” the 2nd webinar in the Evidence-Based Pediatric ME/CFS Medical Education Webinar Series by Dr. Peter Rowe is available now on YouTube. This objectives of this medical education webinar include: discuss the clinical features of common...

Just fyi - this is the first in a planned series of about 5 webinars with Dr. Rowe related to pediatric onset ME.

I understand impatience!! (And I am very sorry you have been so sick for so long!) I hope progress is made so each of us can lead the lives we want to live.

I hope you and your team can make inclusion happen.

I certainly was not "waiting for" the pandemic so much as dreading a situation that would result in the huge increase in numbers of people with complex, chronic diseases that I wouldn't wish on anyone!

@EmmaS302 - Are you including those who were not assigned male at birth in your work?