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I am always going to be disturbed by the replacement of the words "chronic illness" by the word recovery because its not what the word recovery means at all.

I am so fed up of the defaulting to rehab and exercise as if its some sort of common good that can not be skipped. When you don't have enough energy to live and work you don't have extra to be putting towards swimming, that energy comes out of something else and if your at the stage of just...

FUNCAP is the best of them that I know of. I do still have some issues with it however. 1. There is a crush effect at the bottom of the scale between can not do and this will impact for 6 days or more, that doesn't really account for risk and the fluctation of available energy. 2. At the top...

I notice recently the Long Covid clinics haved moved onto only increasing exercise when baseline improves, but they are still treating ME from COVID with exercise. It's still GET really I don't think the fixed increment is a key part of the premise, exercise being curative in any form is wrong,

Can they genuinely not find any other possible intervention other than "rehabillitation". Again they reach for exercise as a cure all despite no evidence it can rebalance the nervous system.

I am not saying its not happening because I don't really have any data (which suggests they don't actually care) but the clinics are being shut down, patients are reporting its even worse and the diagnosis rate on NHS england's data before they stopped even tracking it showed declining diagnosis...

I wish seeing an RCT on an intervention was enough but as we have seen all too often the studies are based on subjective measures and the results don't seem to translate into any improvement for the people that try them after positive results in the study. GET and CBT both got results in the...

No one is accounting for the trip to the lab/hospital, which is a huge extra exertion for ME patients and its variable per patient and how severe they are. The assumption up to this point is they are taking samples from people before and after exertion, they may just be taking them from over...

Free Open Source Software. Refers to software that is free to download but also will access to the source code so you can change the program as well and has rights in its license ensuring that is the case and potentially any modifications you do must go back to the project.

A doctor who advises lifestyle changes to fatigue sufferers and gets poor ratings for not listening to their "bad" patients.

What specialities are in that multidisciplinary team matters. Its become a euphuism for a Psychologist leading some Physiotherapists as things have always been. It means nothing without defining what the diagnostics and treatment are going to be and which specialities are involved. Lacking a...

I spend time promoting the researching charities when they do good work rather than doing a personal gofund me. I feel like it makes more sense to do that and hand their details out to people wanting to help than personally collecting it only to send it to them.

Given the MEAssociations very heavy moderation of its facebook page comments I imagine the forum is a place where any criticism would be equally removed. A forum doesn't fix any of the existing communication issues which all originate from an organisation that refuses to acknowledge and properly...

Diagnosis is the gap. One of the challenges with DecodeME was it required a doctors diagnosis (regardless of criteria) before you could meet the CCC, this caused a big skew in the data as they explained in one of their updates. The Isle of Sky paper on prevalence showed that 90% of GP offices...

There is a positive diagnostic (to an extent) for BPPV based on nystagmus. You can see the procedure for the diagnostic in the below video, if it turns out to be BPPV this procedure will also tell you which type it is and guide you to which procedure will treat it.

One way to go about estimating it is to get a percentage and a count from individuals. For example mine would be 99% with 108 HCWers. Given enough such estimates you could get a view how prevalent it appears to be. The other one is the Isle of Sky paper on prevalence in the UK, they found about...

"CDC-SI/Fukuda 1994 criteria" So just fatigue then not CFS by the more modern meaning.

The reason the government isn't doing anything is because they have an alternate explanation for it all and the message isn't coming from the NHS because the NHS doesn't diagnose these diseases. As bad as ME diagnosis is in the NHS Long Covid is worse. Which is why they are choosing people are...

I am in one but most of them are not online and that is a necessity for participation. My experience so far is don't bother we are just there to rubber stamp things and are kept out of the real decisions.

Merged thread UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023...