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I had what was probably PVFS after getting glandular fever when I was in lower sixth (age 16-17) back in 1982/3, and this continued for a couple of years wrecking my 'A' level studies, even with an additional year of college. That is why I could tell how different it was after I got the severe...

I think that must be the 'FITNET' trial, discussed on various threads on the forum. It may be that some of the children who 'recovered' have idiopathic fatigue, certainly not ME or CFS with PEM.

So the advice started within the local NHS 'pain service' and then was taken onboard by the local Job Centre, rather than being a national DWP initiative. This just shows how divorced from reality the NHS is becoming with regards to how severely these medical conditions (depression, chronic...

If it was me, I would want to know how they had assessed me in each ESA statement. I would also want to know the details of what the tribunal was looking at. This is highly relevant to the mobility element of the PIP award. I was turned down when I applied for DLA (without even seeing a doctor...

It might be worth you getting it and seeing how the scoring compares with the PIP medical report.

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.