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I'm waiting until tomorrow to sign as I'm not up to composing a suitable comment to add today, but I want to do this. The quality of comments on this petition seem more 'useful' than the ones on the first petition. More comments being made by patients who are fully aware of the background...

The Green Paper states that when they brought in the WCA they predicted that only 300,000 working age claimants would meet the LCWRA criteria for Income Related ESA/Universal Credit (not the ESA you claim if you have enough recent NI contributions), whereas it's now over 1.5 million (I think...

It's worrying because the recent Green Paper is saying that some of the criteria are now irrelevant due to advances in assistive technology, implying they want to tighten the criteria even further (there's no acknowledgment that the criteria are too restrictive of course).

If you are severe enough that you can't reliably mobilise with the aid of a manual wheelchair 50 metres then this would put you in the Limited Capacity for Work Related Activity (LCWRA) group for the working age out of work disability benefit. This is probably the only criteria where ME/CFS...

I think these petitions are aimed at individuals, but certainly accept and welcome international participation where this affects them too. So worth sharing on social media and amongst all ME/CFS charity/group membership around the globe.

In the UK, they say benefits are based on 'functional assessments' but then if you don't have a formal medical diagnosis they will assume you are making your symptoms up. That's another reason these new NICE ME/CFS guidelines need publishing asap.

I think after what the Royal Colleges have done any compromises that have been made in the final draft from a patient perspective could be challenged as just that: 'compromises unsupported by the evidence, made to help achieve a consensus'. In some ways this might leave the door open for the...

The new one is more neutrally worded and I am presuming that MEAction was a stakeholder in the guidelines so will have seen the final version. I was more comfortable asking family members to sign the latest one for this reason (though don't know if they will actually bother, they have no...

Yes, with even reduced symptoms I would be able to demonstrate a marked improvement in my ability to carry out named activities of daily living (like having a bath or washing the dishes).

Maybe they want to tap the emotional angle? The accounts might be more aimed at parliamentary ministers or the media, the request doesn't say. Because obviously the evidence is all in the original surveys, but individual current stories, produced in response to the sudden news that the removal...

I was browsing the comments on the online petition (now well over 1500) and some of the comments are actually testimonials, so I would suggest NICE takes a look at them. I'm not on Twitter, so not sure how to get this across to NICE. They may not even be aware of the rapidly growing petition at...

Are any of the other 'patient charities' member organisations of BACME?

Yes, I understand. But I like to go to the original source first, so I can look at it as neutrally as possible to start with. I am aware that PWME have concerns about this organisation, but it's never been a priority for me to spend any time on them until now.

Coming at this as someone who knows nothing about them, when I viewed their website my conclusion was that they appeared to be set up to give professionals a voice under the guise of a patient group. There are just too many professional advisors listed for this to be a genuine 'patient group'. I...

Are there actually any ME patient members of this organisation, as when I looked over their website all they seemed to offer patients is the occasional coffee morning and Yoga classes? There doesn't seem to be any means where members can engage socially online.

So the clinic that Mike Beadsworth, one of the professionals who resigned from the guideline committee, now runs? Michael Beadsworth a consultant in infectious diseases and clinical director specialist in academic medicine at Royal Liverpool University Hospital, and clinical lead for ME/CFS...

And the IAPT outcome measure are highly misleading, so I'd anticipate any ME/CFS patient receiving treatment via this route is going to be deemed 'recovered' however ill they are...

Did the Liverpool clinic respond? I suspect he is referring to the clinic he used to run. EDIT: I meant the clinic Allister Miller used to run, as obviously this is who is feeding the President of the RCP the information. If GET and CBT are so effective, why are there so many long term...

Yes, an excellent well balanced article. Apt that is is published today.

Yes (you are correct). Because there are no services for patients with severe ME/CFS in the UK, most CFS clinics state they only accept mild and moderate (ambulant) patients. Some very severe patients do end up in hospital, but you only need to read Jessica's book to see how inappropriate and...