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Fair enough. I think this is getting way more ideological than I thi k is helpful. I agree with all the points about resources. I could argue your big vs small building points in reverse. Or we could go off into if centralisation or decentralisation has worked.. but I think it’s probably all a...

I disagree. Hospitals deliver for hospitals not for patients. They become big, unwieldy and a nightmare. A lot of what people need shouldn’t be done in hospitals. It should and could be done elsewhere. Being able to go to a community clinic to get a scan has been so much easier for so many...

Why do we need consultants? What would they do?

Indeed. I don’t think we will have a useful ‘ME/CFS service’ until we know what ME/CFS is. But I would like consistent care and the chance for people to learn what I need rather than continually passing me on to someone else or referring me to a pointless ME/CFS specialist service and thinking...

Useful, thanks. Just reporting my experiences and from the few occasions it seemed that was what was happening. I obviously have not performed a wide ranging or exhaustive study. And certainly can’t explain why it was happening. I got the same ‘smell’ at times when getting loads of sea water up...

I really think we need to change how we look at this. I understand why but think we waste too much time and energy focussing on those whose minds we cannot change. They’ve caused harm, but they will become irrelevant and we should let that happen. Focus our efforts on those who don’t have...

This is where I agree with you but also perhaps have a different view on if we can make the ‘local level’ stuff work. Decommission the ‘specialist services’ they’re a waste of, well everything. Have local/community services deliver what people like me need, which is to have a couple of people...

That charities keep pushing for ‘more services’ is my one big gripe. We need to let the old services wither and die, or even better just shut them down, not waste more time, money and patients precious resources propping them up.

Maybe a little tangential but recently I was wondering about the usefulness of saline as a placebo in trials. Or maybe my usefulness. Because I can tell if I’m being given saline, I can ‘smell’ it. Before (or around the start of) my ME/CFS I was in hospital a couple of times and this cropped...

The whole muscle/mitochondria angle just doesn’t come close to explaining my symptoms. This is not a muscular, physical tiredness like I used to get after strenuous physical exertion, nothing like it. I suppose I could envision some mechanism involving calcium channels and changes there. But...

Oh it doesn’t does it. Oh well. Thanks @forestglip

Reading up a bit on IgG4 and came across these https://pmc.ncbi.nlm.nih.gov/articles/PMC12191412/#B37-cancers-17-02006 https://pmc.ncbi.nlm.nih.gov/articles/PMC10423719/ If IgG4 is involved in ME/CFS somehow I wonder if there could be a similar thing happening with people having negative...

Terminology I had to look up which may be useful for others SLPC - Short-lived plasma cells LLPC - Long-lived plasma cells

A lot of his reminds me of the papers for ME/CFS showing changes in T cell populations, but me not really understanding what that means. And it possibly just not being very clear what it means. But this stood out A bit more from the discussion section

Indeed. I’d be very interested in what sort of trial design they think would be appropriate. If you don’t think you understand or have a clearly defined treatment group, okay, you need to do a better job there. Just hoping ‘some people get better’ when you give them something but you don’t...

As well as here being no statistically significant change from the intervention it’s unclear exactly what they were trying to measure in the first place… So no control group and no varied involvement in the intervention. The relationship between symptoms and covid-19 let alone long covid...

I think I mentioned this in the thread on the paper on awe. I believe there to be positive aspects or experiencing awe and wonder. I meditate and practice mindfulness. I enjoy all these things. But neither are cures or treatments for illness. They will not cure depression or ME/CFS. When I was...

I obviously understand the point but agree with @Utsikt and have seen exactly the same resistance to hearing about problems in the software industry in my time working in it. It’s common in companies with poor cultures and tbh I think that’s the same in academia, there are good and bad examples...

This discussion and talk of variety and severity of infection at onset brings me back to thinking about variety and severity of ME/CFS, how much noise there would be in milder cases vs more severe and if we have enough severe cases (a few thousand in DecodeME) to usefully get information in...

I’m psychologically flexible to new ideas. Less so of the old tired ones. I would like to understand their questionnaire and methodology more though to be able to better assess what they’ve actually done (paywalls seem a great way to avoid scrutiny). But it does seem to be a well trodden path...