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Yes I think this is a very real issue. Though of course we don’t know if we do have the same issue they have! In my case d-ribose might be effective due to mitochondrial mutations (and mito cocktail supplements in general might help me more than some people here). I think a bigger issue is...

Supplements improve how I feel. I feel like I’m powered by d-ribose (3 teaspoons spread out over the day). I’m prepared to accept this could be entirely placebo, but I need the placebo to get through the day! And placebo can help a bit even if you know it’s placebo...

This could be useful for evidencing Disability. Laziness or perfectionism or any of the other contradictory and unhelpful stereotypes about ME wouldn’t look like general inflammation on a brain scan. And people with mental health issues are able to claim disability benefits. I wonder if initial...

@Binkie4 car journeys trigger really bad PEM for me too (I assume as a sensory overload type of thing), but was a plane better? Train journeys make me very nauseous/vertigo so I thought it was traveling in general.

I get what you mean by this phrase. My brain doesn’t feel on good form this morning but I wonder if there’s some connection between Younger’s finding and the NRXN1 variants OMF are finding to be much higher in ME? I’m not well enough to read it this morning but I have this paper bookmarked...

My OH got a really bad flu too despite having the jab. We call it Mutant Flu :android: in family folklore partly because it had mutated from the jab versions and it also communicates how nasty it was. Flu seems to change quickly. It’s a complicated dilemma that comes round each year. The...

You must have so much resilience. I’m very fed up with the 20 year stretch I’ve done. It is infuriating that many researchers seem to miss what we’re saying about the nature of our experience. :banghead: Yes! How can we make this heard?! It is possible to live with ME without the symptom of...

To me ME doesn’t feel like it is well described as persistent fatigue, this isn’t a proxy. Or perhaps I just don’t have ME?! Is he talking about PsychoNeuroImmunology? These tweets are making no sense to me either but hard to judge without watching in full. The CMRC seems to have improved a...

:rofl: Loving this! I think it is a theory I should tell myself several times a day. I did find myself googling stuff Ron mentioned as if I could work it out and then told myself “if Ron doesn’t understand the connection yet the likelihood I can work it out by googling papers is almost zero” I...

The trouble is asthma is a condition where plenty of people believe it’s influenced by stress and hypochondria. We need one where people don’t think this. And I’m thinking of finding an already published study, to get around the ethical dodgyness of it. CBT seems to have been used for almost...

Yes because there’s a fashion for Evidence Based Medicine so if you want to do something you need to be able to point to significant results in a trial There are so many of these CBT trials, can we think of one where almost no one would believe CBT makes much difference? That could be useful...

@JaimeS I can’t remember nausea with talking. I get it as like a warning with reading. I wouldn’t describe it as PEM itself it’s more like a :emoji_warning: if you continue with this activity the consequence will be horrible. But that might just be because I’m currently more severe than you, in...

I can’t remember but it sounds like we (people at #MEAction) got a very similar response @Adrian The committee we wrote to is Frenchay based (also in Bristol the city). Of course we’re just doing detective work at this point, but the latest list of outcomes in this thread had dropped all...

I agree but they seemed to be under the impression that this field would still stand without PACE. In a sense it’s a repercussion of our focus on PACE methodology problems- PACE is disregarded as potentially bad science, rather than CBT and GET being disregarded as bad treatment. Cochrane uses...

Can anyone remember the source for children cheating with accelerometers? This does ring a bell, but do we have evidence from the research team?

The PR thread I remember is https://forums.phoenixrising.me/index.php?threads/junior-version-of-pace-funded-pi-dr-crawley.42685/

@MEMarge was the person you spoke to a researcher on the project?

Is the only reason we think MAGENTA is ready to be published that a Bath employee discussed the results?

I’m just reading this thread through to contribute to the #MEAction response. (This is my personal response and maybe quite different from what ends up coming from #MEAction UK) I notice this ISRCTN version http://www.isrctn.com/ISRCTN23962803?q=&filters=conditionCategory:Nervous System...

I get the impression they were hoping to have results strong enough to find a biomarker. I was wondering if this was partly because it’s easier/cheaper to get oral samples than testing gut microbiome?