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Thank you @Andy for posting about this. Interesting that Fiona Fox says on the one hand ‘staff are always open to debating our approach’ and then immediately follows it with an attempt to shut down any and all debate on this issue. Her rejection of the criticism also skirts any response to the...

I agree with @NelliePledge that if an LDN study is done properly, a null result will be useful in stopping the prescription of an ineffective medication.

My UK debit card usually works for making a donation. I also don’t have a credit card.

Obviously viruses play a significant role in the genesis of ME/CFS, but I am not sure that a dormant virus lurking unseen in the brain or in some other organ is sufficient to explain all the symptoms of ongoing ME/CFS. If there was significant viral activity all the time that would surely have...

The problems in this process have been made much worse by failure for the planned wider consultations to emerge so far. My memory is not reliable but my understanding was that the IAG was to produce the protocol for developing the new exercise review that would include ways for engaging with the...

That explains why it always looks wrong when I write down.

I seem to be hallucinating, when I was reading up about Dr Gladwell, I thought one of the Bristol NHS websites said he was on the NICE guidelines committee. However, looking again I haven’t found that again and he is not on the NICE list for the most recent guidelines committee members. He did...

Interesting on the issue of whether the IAG members who have links with named ME/CFS groups are representing organisations or themselves, they are described as “Nominees of three organisations representing people with ME/CFS”, the groups being European ME Alliance #MEAction ME/CFS Australia...

Presumably neither Cochrane or the IAG have published such a list, and at present I suspect it is probably better not to speculate at all about the group’s membership unless individuals put themselves forward officially as Hilda Bastian did in relation to her lead role. Do we know if she is...

The risk of categorising PEM under fatigue is that it increases the chance of confusing it with increased fatiguability, that is getting fatigued by an activity more rapidly than previously. Increased fatiguability is an apparent exaggeration of the normal process found in many conditions where...

I have not read the full paper, but suspect that @ME/CFS Skeptic is on the right track. Many years ago I was the subject of a research trial looking at the effects of specific food supplements (I think fish oil) on our condition. I went into the trial with no preconceptions about whether it...

Thank you yet again to all who have put in the hard work to try to force progress on something Cochrane have been failing to adequately address for a decade now. Given the Editor in Chief’s current refusal now to even take any responsibility for the failure to progress her own promises of 2020...

There is the issue of ‘black swans’. For hundreds of years in Europe the definition of ‘swan’ included it being white, until the first [Europeans] visited Australian and were confronted with ‘black swans’. edited to correct word selection error

There is no simple answer until we have a diagnostic biomarker. Under current definitions by symptom a diagnosis of ME is contingent on PEM. I think we should be very cautious of an ME diagnosis in individuals who have never displayed PEM, though given the variability within individuals...

A great start @Trish

When we contacted BACKME some six plus weeks ago, they seemed to have already been aware that the IAG planned to make an announcement ‘in a few weeks’. Are these other groups, who are saying there is no need for this campaign because things will be happening in this very elastic ‘few weeks’...

Thank you. So apart from the failure to withdraw the 2019 update, which would anyway have been replaced by now had things gone as planned, Cochrane was on track to positively progress ME/CFS up to the Summer of 2021. However we are still left not knowing what went wrong then.

If I remember correctly Cochrane had promised to move ME/CFS from their mental health team to a more relevant team (sorry I can’t remember the correct terms) some years ago. Did anything ever happen with this? It feels like once they failed to withdraw the previous version of the CFS exercise...

Being quicker at making a diagnosis is only of value if those diagnoses are accurate. Given my cynicism over such as FND diagnoses I worry that there is a risk that having mental health specialists with an interest in ‘somatic medicine’ may result in missing other rare biomedical diagnoses and...

I just checked the UK FOI situation and found: So we could only use this if an organisation such as NICE entered into a relevant contractual relationship with Cochrane and presumable the FOI request would need to be through NICE or any other relevant body. Could we ask any public body citing...