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So here we have the RCPCH being referenced. Presumably Crawley writes any paediatric 'CFS' guidelines for that Royal College.

Yes, that was my immediate thought - by this criteria they shouldn't have any members, hence not exist at all. However, it is feeling more and more like we are in an alternate reality so perhaps we need to learn the laws of this one...

Is any other patient group a member of BACME?

This has made me realise how much international collaboration we now have in the ME community, both at patient and at research level. We are so much further on than in 2007 in this regard and much stronger as a community. It is also showing up where any so called patient charity is an 'outlier'...

A ME/CFS research organisation that decided to call their journal 'Fatigue' sets off warning bells in my head.

I expect the long term Long Covid sufferers will be seeing the similarities more and more. Once people have had Long Covid for over a year (so beyond the time most post viral illnesses resolve without treatment) they will find themselves completely abandoned, just as most ME sufferers have been.

A comment from an Australian signee @rvallee

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.