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Exactly. They didn't have any records or other evidence for the FOIA request, but are still happy to take Crawley's accusations at face value and repeat them to a wider audience. They need to put up or shut up (after apologizing, preferably).

The problem with this is that we don't care about "fatigue". Fatigue isn't what disables us, or makes our lives more unpleasant. When we initially go to a doctor, it usually isn't because we are fatigued. It's because we're disabled, in pain, can't stand up without getting light-headed, or a...

Motive is almost never a required element of a crime, so doesn't have to proven. But motive is often featured by the attorneys in court cases, especially if there's a jury, so that they feel like they have a full story that they can judge. What is usually required is intent - not necessarily...

This is the relevant bit from a very helpful booklet at http://www.amdf.org.au/wp-content/uploads/2014/05/Mito-Medical-Info-Booklet-201405-web.pdf . They have a lot of other good stuff on their site, especially in the resources section:

I think @Jonathan Edwards says we're awesome from time to time. Maybe he's got a good quote already, or would like to come up with a new one :emoji_smirk:

I saw the perfect comeback for that while watching an old episode of Ray Donovan last night (naughty language warning): :angel:

It's possible that's what helped me at well. During onset, my walking wasn't too bad, but I couldn't keep my sense of balance on a bicycle, and would veer off the path or fall over (not fun with a heavy Dutch bike). I started sublingual hydroxoB12 even before seeing a doctor about treating...

It's one of those articles which is a bizarre mix of biomedical evidence and psychosocial bullshit. Basically they seem to be suggesting that psychological factors can perpetuate a disease which they don't seem to question as being biomedical. So completely biomedical symptoms cause...

The problem with citing the failure of CBT/GET or other previous treatments to create an ongoing placebo effect, is that the placebo effect wears off eventually. For example, PACE showed mild subjective improvements from CBT/GET months after those therapies ended, but the 2.5 year followup...

From what I recall, they weren't given the budget needed for the necessary appointments with the specialist, or testing. I think there was quite a waiting list as well. Basically the entire thing was set up to only be capable of functioning like a British- or Dutch-style BPS fatigue clinic...

A sample taken from urine was tested via Long Template PCR and Ion Torrent PGM. Urine isn't 100% sensitive for detecting heteroplasmic mutations, but it's pretty close, and much better than testing blood. I do have a rare homoplasmic (normally inherited) mitochondrial mutation, A3796G, which...

Why is it in the research governance section? This is how that team is described on Bristol's website: It sounds like the Research Policy or Programme Management teams would be more likely to deal with this sort of thing, or the university's public relations, human resources, or publicity...

Discussing other forums in a positive manner would be very likely to attract dissenting opinions, so all discussion regarding events on other forums is disallowed.

Yes, Rule 11 doesn't apply to behavior on remote platforms, so people can certainly discuss other forums elsewhere without facing any consequences for it here. From the Consequences of Rules Violations: So basically behavior elsewhere is only taken into account for serious and nasty offenses...

The mito clinic says no, based on my MTDNA being normal. But mitochondrial dysfunction can be caused by other genes which contribute to mitochondrial functioning, and external or acquired factors. Based on symptoms, I'm about 99% sure that I have some form of mitochondrial dysfunction, but no...

Rule 11 applies to discussing the functioning and politics of all ME/CFS patient forums.

Lactic acid generated from muscle use (or certain meds, and maybe a different form from digestion as well) can end up in the spinal cord and brain. I know that happens with MELAS, though I have no idea if the mechanism for it is specific to MELAS. Regardless of the source, my arms burn first...

I doubt they've changed much since then. Likely they found that there was a profit to be had from being a revolutionary communist back in the day :-P I suppose there was a similar perception that you could trust communists not to be pro-corporate interest, just like you can trust a "science"...

I'd fire him. He might be a nice guy, but patients need good doctors :-P

They're pro-corporation and pro-government, since that's where they get their money from. More specifically, they promote whichever institutions have "donated" money to them.