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Red flags.

Would love to know what citation you can come up with. The thing with the history of ME is that we have suffered from dreadful stigma and poor to very poor research funding which leads to poor to very poor objective evidence with adequate power to prove evidence. A self selected, self reported...

Google says: In the simplest terms, fast-twitch (type II) muscle fibers are built for short, powerful bursts of energy—that's in contrast to slow-twitch (type I) muscle fibers, which are built for endurance activities like long-distance running or biking I would be careful in making a judgement...

It begs for 2follow up studies: ‘Where are they now?’ and ‘Do they trust us to even call them again?’

Perhaps the abuse is by neglect and neglect takes many forms, organized and not organized. And I am surprised to hear she is not Canadian. https://me-pedia.org/wiki/Diane_O%27Leary

It is my understanding that she is Canadian and may not understand the blatant abuse that happens in the UK. She may not be in tune about what is going on at the granular level and then at the SMC level in the UK

Oh by the way the hospital lost, and has to pay 50+ million to her and her family. Her treatment caused her mom to commit suicide.

Recently in a court case in the US for a family seeking damages in relation to a hospital treating a minor, an expert physician testified that FND was the new word for conversion disorder. Now I have no idea why this co-investigator truly wants to study FND or her own ‘conversion disorder’...

If my memory is correct some had muscle biopsies.

I will be interested to hear the rationale for their study design, and look forward to results. I wonder whether they wanted 100 people to get an opportunity at trying the drug, versus 50 got it and 50 didn’t to gain wider knowledge about response to start with, then move on to the blinded...

it is likely (I didn’t check links) a phase 2 a) trial, pilot study, which means they are testing the drug as an open-label to the study population to assess safety and effectiveness, and potentially dosage. We do know this drug is used for other purposes, but it hasn’t been tested for ME. A...

If Hilda Bastian visits the forums, I am offering my deepest condolences for her huge loss.

Sad state of affairs in 2023, that we are still here, trying on one hand to explain personal experience of PEM and on the other hand for the professionals to understand. PEM is highly different from patient to patient, such as delay until crash, symptoms, intensity and duration, type, duration...

I have a positive lab test for EBV and an exposure. That’s what triggered it. 15 years ago this month. However at this point, I’d suggest they did something, like if their life depends on it. Many of us don’t have another 20 years. Instead of LDN, how about trying an EBV vaccine? how about a...

They mentioned that this trial would help them build experience for future trials, and I am not against that. There is a big need for capacity building in clinical trial and while this is a softer target, they will be looking at objective measures which is a good thing. Building capacity for...

We haven’t met @Perrier but I haven’t tried it for the simple reason that my doctor won’t prescribe it to me as it is off-label. Regardless, while people may have reported some improvements, I question whether it falls into the placebo effect and the improvements are acceptable in approving this...

Will PM you

The issue I have is that outside our patient community, the general population still doesn’t know or understand what ME/CFS is (or myalgic encephalomyelitis, or even chronic fatigue syndrome). Long Covid May be slightly better known, just slightly. Then the messaging re: needing clinical...

How can they not discuss this in the paper and be precise about whether the death was related to the PSS ( IE problem that was ignored or misdiagnosed as psychosomatic) or was related to suicide? in both cases, the treatment and diagnosis presents safety issues

Abstract Raynaud’s phenomenon (RP) is a common vasospastic disorder that causes severe pain and ulcers, but despite its high reported heritability, no causal genes have been robustly identified. We conducted a genome-wide association study including 5,147 RP cases and 439,294 controls, based...