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Did you see the actual medical/assessment report that shows how the points were awarded? DId she get put in the Support Group because of limited mobility or because the DM applied the special 'severe risk' exception rule? Edit: I would still encourage PWME filling out their ESA50/UC50 to state...

I'm still working my way through the DWP ESA/UC assessors manual, but my impression is that the only way for a person with M.E. (with no other health conditions or disabilities) to get into the Support Group of ESA (or the UC equivalent) is if the Health Care Professional (HCP) accepts that they...

To be fair, this isn't necessarily a bad approach - depending on the job seeker's circumstances. It fits with current UK equalities legislation (Equality Act 2010) which prevents employers asking about an applicant's disabilities or health conditions prior to offering them a job, with a few...

Thanks for posting this information. Speaking as someone who, despite having ME for over 25 years, has only been following ME advocacy for the last couple of years, it makes for a very interesting read.

Regardless of the size of plate used, I still usually manage to get a lot of its contents either onto the table or onto myself when eating (and miss the plate when trying to put food on it from the cookware).

I think integrating 'CFS/ME' services with pain services is likely to cause more harm to us, than good. My local pain services have been BPS led for at least the last decade. See the example PDF for what they offer - it is all CBT, GET, activity and psychologically based therapy and...

They've done that in my area (Somerset) too! Very difficult to get to even by car, impossible by public transport - they could have located it in the biggest hospital in the CCG's area, which is in the one town with good public transport links and is most centrally located for all county...

I agree with regards to CFS/ME clinics. I explained about the right to choose specialist services because 1) It really annoys me how almost all services that fall under 'mental health' (CFS/ME, ADHD, Autism diagnostic services, etc.) tell patients that they won't accept 'out of area' referrals...

Again, this may not be true, despite what they have told you on the phone. You would need to find out from your own CCG what CFS/ME services they commission. If they do commission a specialist service, then you can choose where to go anywhere in England. The only restriction is that the service...

Regardless of what these services write on their websites (which often incorrectly says that the patient needs to live in a specific area), if your CCG commissions specialist ME/CFS services (that is a similar type of service), you have the right to choose where you are referred (anywhere in...

More info on the NHS e-referral system can be found here: https://digital.nhs.uk/services/e-referral-service/joint-guidance-on-the-use-of-the-nhs-e-referral-service-2018

They should be able to look on up 'E-referral' which services are 'routinely commissioned' by your local CCG (Clinical Commissioning Group). The software should also highlight to them the criteria a patient needs to have met to be eligible for referral. You can also enquire directly to your...

It wasn't just 'moaning'. Research proposals were actively rejected on the basis of committee discussion. I can't publically say anymore than that.

Yes, the meetings (like NICE ones) were confidential, so I have to be careful what I say. However, it helped my development to be part of these (sometimes private) discussions between committee members.

During my time as a patient representative with the NIHR, more than once I have been in a room full of consultants, mostly surgeons. Hearing their views on psychiatry was, to say the least, interesting. Lets just say, it wasn't exactly positive.

I don't read the biological research around the causes of autism extensively, but much of what I have read suffers from similar problems as the biological research in ME: small sample sizes, poor use of appropriate controls, correlation being seen as causation, data 'fishing', etc. Autism is so...

I've posted forum links and academic references here, hopefully to bring them to the attention of the members on the NiCE guidelines committee, as per the purpose of this sub-forum: https://www.s4me.info/threads/purpose-of-this-subforum.7173/

I made the mistake of doing a Google search to try to find out if Wessely is esteemed by his psychiatrist peers (those not involved with his CFS/ME work) or whether they are appropriately embarrassed 'by association' (sharing the same profession). This led me to the following link...

This is the paper he is referring to in his 2012 comments: http://www.simonwessely.com/Downloads/Publications/CFS/6.pdf I've just read it after following @Sly Saint's comments on this thread...

I'm not sure if the paper by Twisk, as discussed in the 2017 thread, has been considered by those here on the NICE committee. I adding the link to this thread in case it has been missed, as the paper (and the surveys it references) are of particular relevance to this call for evidence...