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Whenever they say tailored treatment I just replace it in my head with rehab/exercise and CBT. Its their euphemism for doing the default thing when they have no real treatments but can still get paid for doing something. I might be wrong they might have a real protocol in mind but this is how...

I asked for one and was refused. I was refused a lot of rule out tests including diseases listed in the NICE guidance that require being ruled out. I would not be surprised to find many others have not had this tested. The problem is they do Cortisol and if that is normal enough they claim the...

I remember looking into this one earlier in the pandemic and it was one of those offering exercise and didn't take severely impacted patients at all. That whole region seems to be one of the bad ones from the DecodeME prevalence study and their ME services have been called out for not being NICE...

If only I was well I would be working on making a linux phone right now. We badly need a freer alternative phone UI to the duopoly. Right alongside it we need a tablet and ereader all running Linux with an appropriate interface.

I don't know how we do it but at some point the basics really need to get to Tessa Munt, the APPG and ministers in general. The expertise doesn't exist in the NHS to handle this condition, that its so different a normal hospital bed is actively harmful and its going to take a lot more than just...

Number of individuals maybe 100k. Cost of providing something that is so alien to the NHS? Substantial given how incredibly ill server patients and the immense cost of errors. The number of people able to provide this service currently is 0.

The article doesn't give any details beyond masks either which suggests to me this is surgical masks again. All doing this repeatedly each year does is expose the horrendous ignorance and lack of science following in the healthcare system that is still refusing to accept airborne spread.

My doctors never ordered tests to rule out other conditions, they just run routine tests and then dismissed me. I however have run a number of tests either myself or something bought privately to rule out other conditions like MS. I doubt I will ever get a diagnosis from my GP or otherwise of...

I don't think you can put the NHS in charge of solving this problem, I don't think it has the sort of culture that can solve this problem without resorting to harm, they believe it too deeply they will twist any guidelines into the same thing until there is a proper approved treatment, and even...

The other term I really hate is "healing". As if living your life with a debilitating chronic illness is some how healing from something, its implying people are recovering when they aren't. All of this flowery language covers for extremely unpleasant continuous awful human experience just to...

It seems he thinks that the bit that isn't accurate is that he isn't contractually required to listen to the patients he has involved? I mean that is true but its also precisely the problem I have with these PPIE systems were patients are not listened to. I have no idea how getting patients to...

:emoji_angry::mad:! Very much a sign of what is coming for ME patients in the UK. BACME has its model and this is what its going to roll out country wide. Rehab based on dysfunction, doesn't matter if its the same thing renamed its coming to you soon.

Its pretty clear this has all spilled out into the public because he has chosen to ignore the patients comments on the measure and now he is attacking patients in the open not surprisingly patients are fighting back. I have had just about enough of researchers doing this, using PPIE as a...

Anger at our charities undermining and minimising our disease isn't an option, but it sure should be!

They clearly didn't believe ME/CFS was real. The WHO and CDC define Long Covid as symptoms 3 months after a Covid infection not explained by another condition and then everyone ends up running research on people that meet the clinical definition of ME/CFS! Some of the researchers even expressly...

This is the DASI functional capacity test.

There are loads of these 100+ measure combined machine learned algorithm diagnosis tools coming out at the moment.195 measures in a study with 60 people and 8 ME/CFS controls, I have to question how likely it is this will just fail the moment more patients are tested. Maybe one day these highly...

The PHQ-9 has the issue of conflating symptoms with depression which the disease has like sleep disturbance, little energy, appetite changes, cognitive issues and reduced speaking speed. 5 of the 9 items do this and hence distort the questionnaire substantially for PASC and other diseases with...

I missed that and I agree its so dumb, its obviously wrong having a longer PEM cycle doesn't inheritly map to a more severe ME, if it does I feel citation needed!!! Actually it brings me to a wider problem with the scoring. Adding the scores up makes no sense, since a lot of them are basically...

We have all seen the followup on SARS to the 96 patients who were diagnosed with ME/CFS, and indeed ME/CFS. Its a lifelong condition and everyone should know that already. Its also stunning that nearly 6 years into this pandemic and they are talking about 3 years instead of the full length. A...