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What’s the point of binning off Crawley if people like this are still involved?

Except some of them pop up later because they should have been diagnosed with MS or Parkinson’s or cancer. By which time they are likely to be more costly to treat as they have gone untreated for years and their illness has become worse than it was when they were being MUSd.

Wot @Andy said

I agree but I can still do stuff live alone do all my activities of dailyliving for myself in ME terms it is mild/moderate borderline. But that’s just comparing with people with ME. We had a great thread a while back about severity and terminology. And I definitely vote for ditching mild.

I have what’s called mild ME I’ve had to retire from my job, having to sell my house to live somewhere more accessible, moving cities because travelling back and forth a 100 mile one hour each way trip makes a lot of my potential social activity out of reach, I cant manage a one basket...

I’m interested to understand something at nursery school level about what their findings about purines mean. I have a very close relative who has gout (which is very well controlled with medication) and the only time I’ve heard mention of purines before was when they were telling me about gout...

Those companies/organisations are already delivering generic IAPT CBT and have been doing so at least since 2016 to my knowledge. Here’s the set up I went through the CBT sausage machine with https://www.insighthealthcare.org/about-us/organisational-timeline/. I’ve heard within the local...

Most likely I’ve said this before but I really don’t understand how MUS CBT panacea mentality can possibly be compatible with the NHS attempting to address delays in diagnosis of serious illnesses which do actually have treatments available.

I posted above that I use capsules which have a paste in them. I recently tried a sample of the type of CBD that is reckoned to be more helpful for sleep. They only had it in the oil It does seem effective but it is like taking drops of double strength Camp coffee direct on your tongue...

Sums up the segue from “all your results are normal” to “let’s get you some CBT” perfectly. Because an illness is currently lacking a medical explanation does not mean it is never going to be medically explained. MUS is not being used as an honest plain English term. It is weasel words...

:wtf:Oh yes Aunty Clare’s pep talks drink fewer pints and get off the bus s stop earlier. The role play is so fake. You can tell it’s not a genuine ME patient they haven’t got a print out of any research they found online

I’ve not had physio I have Bowen therapy and cranial sacral which are both fairly gentle but help me. I don’t think I can do the survey and maybe those 2 things are too far outside the mainstream for physio professionals to be interested in my experience?

“Fatigue-like behaviour” :wtf:

Although I wouldn’t have said I had any GI issues at all at first I later realised that I did have some but as with most of my symptoms only mildly - Acid reflux bloating and diarrhoea. ETA nausea. I had gradual onset undiagnosed for at least 8 years so it is hard to say before/after. I take...

Does anyone know ME friendly OTs in the U.K. we could send this to. Would be great if there could be a group like @PhysiosforME for OTs.

Hopefully at least a small tsunami.

Well I imagine like RCGP their publishing process is somewhat long winded so possibly we can’t read anything into the time lag???

Yes I have a type of physical therapy called Bowen which is very gentle and I find it helpful. No objection to physical therapy whatsoever as long as it isn’t something that makes me worse. ETA although of course as I have mild/ moderate ME I can tolerate a lot more than many with ME

Maybe he is just sick of their inability to see what’s wrong with their work without having it hammered into them.

Oh and @Caroline Struthers