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There are only two forms of disability - 'can't walk good' and 'mental health'.

It sounds like she thinks disability means 'can't walk good'.

Looks like I never replied to this. Yes, that was me and it was the same service. However, when my friend got his clinic letter, the recorded diagnosis was "Post-Covid Fatigue Syndrome", for which a unique diagnostic code doesn't exist.

In an unexpected twist, one of my best friends has (sadly) just been diagnosed with "Long Covid/ME/CFS" by none other than...The Bristol ME Service!!! The OT (not one I know) who diagnosed my friend said that it's "essentially the same thing and an acute Covid infection was clearly the trigger"...

This is very true and why I get so sick of being asked about my symptoms.

I had most of these symptoms before I got ME.

Those levels don't work for me - I'm mostly housebound but have no help. If I had help, I might be able to get out more, or focus on 'activities that are important to me'. Also, I don't find the distinction between PEM and the first four symptoms clear enough.

Actually my experience of him as a physio was rubbish. The one time I made the effort to see him in person, it was to take advantage of having access to a physiotherapist to discuss some MSK issues that pre-date my ME. He didn't even examine me, except for trying to force me to do the Beighton...

I know I've written about my experiences with Gladwell's clinic before (which surely he shouldn't be leading any more per the NICE guideline, no?) but I'm not sure if I mentioned that at my first appointment there with the OT, she told me I had 'central sensitization' and gave a brief...

In as much as I can follow all this, it sounds about right to me. I've seen many physiotherapists over the years for different things - including just this week, I had a home visit from a Community Physiotherapist (from the same organisation that runs the Long Covid Service) - and they've all...

The thing is, physios at least can diagnose some MSK conditions (or at least that seems to be largely accepted in the NHS), so I think it becomes a bit of a grey area. I have the same issue with 'pain clinics'. I've had GPs say (e.g. when I had a suspected slipped disc & 'sciatica' over...

@Jonathan Edwards, this OT was my main contact at the service. It was she who initially diagnosed me with "PVFS following Suspected Covid-19" and later updated the diagnosis to 'Post Covid Syndrome' (although the latter was already on my GP record by then, so it was more of a formality). Indeed...

I believe it's all about funding. I'm sure they're getting extra funding for treating Long Covid patients as well as ME patients and they're treated differently. That letter came about because I arranged an appointment to ask for an ME diagnosis, which I believe is appropriate, and I wanted it...

I've come late to this thread but saw at the beginning Pete Gladwell is involved & @Trish's wariness of him and I've skimmed through as much of the other comments about him as I could. Just based on my personal experience, I don't think he should be involved in any ME Research. While he was...

Copied from the UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Peter Gladwell is part of the team involved in an MEA funded project to develop PROMS to be used in clinical care and service evaluation I've come late to this thread...

Hi, Linda, it's me (Emma). I've just double-checked my icd-10 books and done a quick search re: SNOMED (which I don't use) and no, it's not a term in either, nor one I've ever come across (although I don't come across ME/CFS very often personally, except as an occasional comorbidity). The...

I was struck by something from this table.