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Is anyone else a little surprised to see the mast cell related charts not showing more prevalence? I'm looking at the anaphylaxis and allergy charts. They're pretty flat. I dont know what the prevalence of mast cell disorder is in the ME population but I would think the majority experience it to...

Solve ME/CFS Intitiative are sticking by their guns that this really is slated for LongCovid

Merged thread Cort Johnson's piece https://www.healthrising.org/blog/2020/12/24/congress-billion-covid-19-long-haulers/

I often view subset findings as simply a matter of having sampled too far downstream from the core disease mechanism. We are a heterogeneous group when you take all of our symptoms / phenotype into consideration, and therefore can be grouped accordingly. But we all have fatigue, and...

Both red blood cells damage and kynurine identified in LongCovid research https://news.cuanschutz.edu/news-stories/attack-on-red-blood-cells-a-prime-suspect-in-covids-debilitating-effects?fbclid=IwAR2BjzW8TolU6d1b-VxUN-n6F55E6dMVcMwGkMR-huuW-wbi8mEvqTNJt-s

"But Moreau did emphasise that the test was ME specific." Could Moreau have meant that the test was ME specific relative to the controls? I dont know what is standard language in this respect but this seems unintentionally vague.

Yes, i'm mostly unfamiliar with this process but I wonder where that tipping point is where more feedback becomes less, and worry we might cross it. Maybe it's better to identify the highest yield stuff and pour all our feedback capital behind those.

This may have already been mentioned here but could we ask that the guideline explicitly state that ME/CFS is not MUS? Can this guideline be used to close those doors that we know the BPS brigade will try to use to sneak in through the back? Another thought: where the guideline references...

I did note while reading (skimming) the 'expert reactions' in the Science Media Centre piece that they seemed kind of resigned about the language of the draft. As though they had gotten as much as they were gonna get.

Great news! Gratitude for all your efforts in making this happen. One curiosity which may have been covered. My reading ability is limited. Isn't hypochondriasis essentially synonymous with Bodily Distress Syndrome? I was surprised to see it too listed as an exclusion.

The following are the case definitions used for this Cortene trial: "Diagnosed with ME/CFS and meet the following 3 case definitions: Fukuda Research Case Definition for CFS (1994), Revised Canadian Consensus Criteria for ME/CFS (2010) and the Institute of Medicine (IOM) Clinical Diagnostic...

From Cort Johnson, July 2018 "The study consists of a 4-week PRE-treatment period, a 2-week treatment period, and a 4-week POST-treatment period. Both the PRE- and POST-treatment periods will commence with a cardiopulmonary exercise test (CPET), where the investigators will record patient...

Is it unusual for a failed replication study, in ME/CFS no less, to appear in Nature?

@RDP That makes sense. I just want to say that I feel a tremendous amount of gratitude for you and your work. I find the bistability and common mutations perspectives extremely compelling. My deepest thanks.

I was only able to read a fraction of the paper, so I am lacking some context (and lots of technical insight), but I did find this sentence a little disheartening. I hope he is just being extra conservative. "While it is possible that the IDO metabolic trap lays bare the etiology of ME/CFS...

I dont have any technical knowledge about this, but I have wondered if the severity of ones illness could in part have to do with the number of entrapped cells, and not just the degree of entrapment at the cellular level, since the metabolic trap seems to be a cellular phenomenon rather than a...

Identity is the least of my concerns. I dont struggle to find an identity, either in this illness, or in the little bits of my life that are less touched by it. As others have said, just get me the hell out of this mess. Then I might cobble together some kind of bare bones identity as I head...

This thread brings together posts from three previous threads on the topic of Aripirazole I heard a while back that Stanford is using a low dose of the anti-psychotic Abilify as a neuro antiinflammatory and finding some success. Are any of you here using Abilify, in either low dose or standard...

Was there any mention of Suramin? As I recall, that was another drug that corrected the nanoneedle impedance. Thanks for sharing this info!

I just keep hoping that, after the review authors forced this move to withdraw into the open, Cochrane has pivoted to a very visible display of their 'reasonableness' whilst leaving the authors no place left to stand. But I have been able to follow this story only sparsely.