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I agree and others, who know much more about this than I do, have suggested immune dysregulation. Perhaps the GWAS study (Chris Ponting) will provide evidence of the underlying cause.

Interesting insight/approach ----regional/institutional jealousies are a good getting the media excited. I've sent an email to someone in England (from memory) whom I was in contact with a few years ago (2019). From memory they were working with their MP; just wondering if that was the Teresa...

With respect strategist some of the folks [I'm not thinking of Coyne here] who are involved in ME/CFS "believe"/claim they can treat much ---- CBT seems to be a way to treat any difficult to treat disease. Others, who worked with them and know how the system works, actually suggest that these...

I only read a few of the comments above. I think I recall that one of the forum members, with extensive clinical experience, pointed out that they: monitored the outcome, of interventions, at a group level; and monitored the effect for each individual. Therefore, if there was a sub-group who...

Just wondering if we @Keela Too could come up with a friendly MP [Jim Shannon?] to ask some questions --- we're definitely "don't mention the war!" I managed to get my MP [Claire Hanna] to ask a question; could try again.

On the plus side the methodology could help to enable those with a high degree of disability to participate. My issue is that there is no attempt to objectively measure the effect of the intervention (Actimetry - FitBit or whatever). Had they established a pre-intervention baseline and then...

Sadly this quote "‘If you are reading a study that is un-blinded, with subjective outcome measures, then you may as well stop reading it and move on.’"* pretty much says it all i.e. don't read on. I say sadly because I'm a failed chemistry technician - so the references to Gas...

Thank you.

Excellent analysis. Reminds me of a podcast title (haven't watched it yet) "Send in The Not Complete Clowns". What you've set out above makes those responsible for NIHR i.e. the Minister/Department for Health and Social Care look like complete clowns. So by copying in the APPGs (ME/CFS & Covid)...

Yip and thank you very much for the bio - I just need to be able to find it the next time I need it! Slightly weird I once wrote to Peter Bottomley [then part of the APPG] asking that they lobby the Government to use the Government laboratories (in York?) to try to find a biomarker for ME/CFS...

There's a career development strand under EU funding programs - Marie Skłodowska-Curie Actions I had a look at a few biops and it seemed more about "me" and my career. However, I'm not saying it isn't a useful development route for some research areas. Haven't looked at the UK "career...

I agree fully with politicians supporting the BPS nonsense. There was a politician (James Bottomley? if not then someone in that bunch) whose wife/sister in law or some such was a psychiatric nurse. Their view transposed into policy --- get em out of bed in the morning --- better for them ---...

Yea it wasn't in the opening post!

I think we're thinking of slightly different things here. I'm part of another group which has had a limited discussion with European Federation of Pharmaceutical Industries and Associations*. One of the issues is identifying potential treatments - others on Science 4 ME have pointed out that...

I'll settled for anyone succeeding but e.g. if you can get an MP to ask a Parliamentary Question ---- concerns that research funding is being wasted --- small changes to methodology needed (like actimetry e.g. FitBit). Then it might yield results. Also, social media-- I listened to an episode...

[EDIT - added quote] "The greatest danger of the NICE committee failing to reach a sensible conclusion came from downgrading evidence quality on the pretext of disease criteria within the bogus GRADE system rather than applying clear thinking and downgrading on bad methodology." Nailed it.

Yea there's a need to challenge the Department for Health and Social Care [DHSC] for this incoherence or as per CRG - lack of thinking - I actually think it's uncaring officials in DHSC. The other target should be NIHR - funding body cc DHSC, APPGs (ME/CFS & covid) & ME/CFS & long covid charities.

Agree completely; however, rituximan was identified by Doctors treating people for something different. So collating data from treatments, administered to people with ME/CFS, is a strategy. However, yes - I agree, others have said that it's difficult to see a way into i.e. to treat ME/CFS -...

Yea it was dexamethasone (from memory). However, as you're aware, I'm really thinking of the analogy to identifying treatments for ME/CFS.

There was an interesting feature on clinical trials drawing on the experience from the UK Recovery Trial re coronavirus --- basically no budget --- just collect data on how people were treated and whether they improved --- within 100 days they had identified an old steroid which worked. Seems...