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This is an issue I know nothing about, but wonder if this is a situation that aligns to what we argued for in relation to the NICE guidelines review. That general support may be required but that it would best be provided by a specialist nurse who could respond to medical issues, practical...

My joke that we would need to complain that Cochrane’s response to our complaint was in breach of their own complaints procedures was perhaps not as far fetched as I first thought. It seems that Cochrane has decided that we are not a group that they intend to meaningfully respond to at all...

There is an interesting discussion developing on the comments thread at Hilda Bastian’s blog much of which involves members here https://hbprojecttalk.wordpress.com/2023/11/10/welcome/ (also linked to above). If you go to that page and get what looks like a blank page, clicking on the title...

I suspect the big issue is not timings, rather that any of the complaints/concerns about the 2019 Review were either ignored or responded to with the reply it would all be fed into the IAG, whereas the pro 2019 review objections to any replacement review process even happening resulted in...

When do we start submitting complaints about Cochrane’s Complaints Team’s failure of process?

I thought that was possible, but looking at Google Scholar I can’t see how to do it other than looking at each citation in turn. This could be my ME brain, or it could be that you need to use a different search engine.

At least Cochrane are including patients/carers within the concept of ‘consumers’, though their current shenanigans in relation to the flawed CFS Exercise Review suggest they have a way to go to effectively put their policies into practice.

I had been surprised by the extent and reach of the citations, and this not only illustrates how these ideas have unjustified creep into other conditions but also illustrates how deeply engrained they have become in the post viral conditions literature. For me this strengthens how vitally...

I am not sure that CFS was ever ‘aetiologically neutral’, despite being presented as such in the 1980s and 1990s. It was used to distance from the label ME which was seen as a biomedical condition and I suspect always contained the unspoken inference that CFS was definitely not biomedical, so...

It feels a life time ago. I had a great sense of achievement getting there, it was the first such event I had been able to get to for a number of years. @dave30th ‘s clear setting out of the flaws in the PACE methodology gave a sense of optimism, though sadly PACE itself still stands and other...

Thank you for all the hard work still being done, especially in contacting interested patient groups. There must be nearly 100 now supporting our open letter. Sorry to preach to the converted, but … Just think that it took a number of years of comments, concerns and complaints through the...

When medication has a dramatic effect you can probably rely on unblinded self reporting, the problem is with something that has a slight effect or no effect. I suspect trying to blind yourself would just get too complicated, wouldn’t it be better trying to focus on either objective outcomes or...

The SMC’s past coverage of ME/CFS, though recently more balanced, for years promoted only researchers with a narrow partisan approach to research and actively sought to protect those scientists from valid methodological criticisms, even participating in the active vilification of an entire...

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...