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This whole individualised medicine thing is a serious concern. Didn't the concept emerge from the possibility of (eventually) predicting which patients are most likely to respond best to a particular cancer therapy, or be at risk of serious side effects from a drug, depending on their genetics...

I'd completely forgotten how bizarre the criteria are! My claim was indeed based on mobilising. I use a powered wheelchair, so they've never even bothered to call me for assessment. But my inability to concentrate for long is far more of a barrier to work than needing bloody wheelchair access...

That's how it's supposed to work in the UK, and for some fortunate people, it does. In theory, it's a sound idea: the impact of the same condition, impairment, or injury can differ vastly between individuals depending the their age, co-morbidities, profession, and social circumstances. In...

As an aside: We had (briefly, fortunately) a GP covering at our surgery who believed much the same, but even he knew that GET and CBT don't work. "I wouldn't recommend this clinic [our local ME service] because they haven't done much to help anyone I've referred – people are still not getting...

Yes, I guess even if it's more an attempt by a patient rep to gather additional evidence than a formal part of what the committee is doing behind the scenes, it could still be important.

If it is real, surely NICE will make the request in some formal way?

Good-o! Let's see it then, Andrew.

I would agree if there were any specialists available, or any existing understanding of what needs to be monitored and tested and reviewed, as happens in other specialisms. But these services, and the expertise to run them, need to be built from the ground up. I don't know what the clinics are...

Thank you!

I'm not able to attend virtually, but I'll note here one of the things I'd like to know, assuming there have been no major changes: Namely, are all the current ME/CFS clinics are going to be closed to new referrals, whilst the transition is made to offering patients social rather than healthcare...

These devices have no meaningful way of knowing much about a person's cardiovascular fitness anyway, as you've said many a time. They have some idea how much the wearer exercises, and limited information about their resting heart rate and response to activity, but that's all. I think my...

Perhaps once the new NICE guidelines are issued, that could be used as the prompt for a review? (Provided the guidelines haven't been changed drastically, of course.) Where there is general agreement between patients, doctors and researchers that a guideline is as sound as it can be, given the...

This is a good point, and also raises the question of whether thresholds for physical and cognitive exertion can be different. Most days I probably can't do enough cognitive activity to trigger PEM because of attention deficits, but I can also hyper-focus. When I've really dived into...

I'm one of the folk who's never had noticeable PEM from cognitive activity alone. Sensory stimulus is different altogether, possibly because I also have autistic sensory sensitivity and my responses to it are very physical – it makes me tense every muscle in my body, toss and turn continuously...

I hope it goes smoothly, @Agapanthus, and you don't have to take it any further. It's all such hard work, mentally, physically and emotionally. For anyone else who has a renewal coming up, the Benefits & Work website offers training modules on PIP, including caselaw, that are suitable for...

True – I got my first job that way. I only went for that one interview, and started work four days later. The whole process of spending 37 hours a week searching for work, and being forced to apply for jobs where you don't meet even one of the essential criteria, is completely...

Also, they could revisit a previous approach where they acted as the claimant's ally when it came to employment. In the 80s and early 90s, a relative of mine worked for them as a disability advisor; her role was to know employment law, advocate for claimants, and (where necessary) help negotiate...

This!

It might also be a sign of already being in significant PEM, which seems to reflect my experience. Activity when not in PEM often makes me feel great, though of course it doesn't last long. I can only get any sense of where I am by starting to do something. If I can't push through my body's...

@yME, I saw Prof Vaughan Keeley at his clinic in Long Eaton, which is near Nottingham. This clinic does see people from out of area, and will accept direct referrals from a GP. (I don't think this is the case at St Thomas's.) As @Binkie4 says, there is no treatment for lipoedema unless you also...