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Definitely agree, I’ve been wondering whether to say something, but figured it’s probably too late to change once it’s published. It is something that should have been discussed with the author by the publishers or reviewers. Thankfully the paper is clear even though the title isn’t.

Sorry to hear of your new diagnoses, but glad to see you’re getting answers. I get a similar pain to intermittant claudication in my legs too when walking, but mine is from Spinal Stenosis.

@Snowdrop I agree completely there should be far more care taken with what is put on the website. My comment was only in relation to the length of time taken to respond to a request.

@Snowdrop I’m pretty certain all of the commitee members have ME/CFS, so it is not unreasonable that illness gets in the way of getting on to something straight away. It is a sad necessity that organisations have to be manned by patients.

Yes that was my thoughts too. Thankyou @Action for M.E. for the statement. It’s a step forward, but not far enough. I hope you do take note of the feedback on this thread.

dbSNP has the frequency for the minor allele at around 43%, so it is a common variant. That doesn’t make it irrelevant though. In Celiac disease for example, 98% of people with the disease have the predisposing variants. Around 55% of the general population without Celiac Disease carry these...

I think part of the problem is that this is a university where multiple PhD students need a novel hypothesis to research and report on and that is probably the main focus. I suspect finding answers to ME/CFS is probably a secondary goal.

“We are international medical practitioners and researchers in the field of myalgic encephalomyelitis (ME), ME advocates, patients and their supporters.” Not just doctors and researchers. I agree there are several different agendas and I doubt there will ever be consensus. I think what some...

I agree. I am uneasy with trying to lobby government for a change that there is no valid evidence base to point to. Science doesn’t work that way. Patients don’t get to define an illness, researchers do. I think we can lobby for more research to better define the illness and insist to the...

Sorry I don’t understand the point of the gif. Because it moves while I’m trying to work out what the charts show I can’t make any sense of it at all.

...and in the Action for ME patient information

Is there any evidence from any trial that people with ME/CFS significantly increased what they could do following these therapies? They don’t like us using anecdotes, but when challenged on these therapies they point to how they’ve helped so many people in their clinics. I don’t think they can...

No, completely different group.

There are plenty who have already tried to educate her. This is not her first trial with cfs.

I think the trial minutes are very valuable in this regard

If it’s anything like ME/CFS in Australia there are a multitude of patients with the diagnosis who probably better fit a chronic fatigue state. These people are enamoured with stress and depression as a cause and exercise and mindfulness as a cure-all. I regularly join and then leave the...

I hope you find a work around. If not, Dante Labs really should redo your test if they are unable to provide your info in a readable format

I think the vaccine makers and researchers accept that there is a rare number of people who are adversely affected by a vaccination, developing life changing conditions thereafter, including ME/CFS and GBS. Because they do not know the underlying reason and cannot tell in advance who these...

Seizures lasting hours are not common following injections, nor does the autonomic reaction explain an ongoing seizure disorder. Again it was probably coincidence, but I don’t believe it was the doctors’ place to decide that. If faints and seizures are more common following some particular...

As long as it is good science. I have concerns when adverse events are not studied in case it gives a foothold to anti vaxxers. I was with my daughter in hospital when a young girl was brought in having collapsed 10 minutes after Gardisal vaccination with a seizure which took hours to bring...