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This is yet another unbelievable action by the MEA. You must be feeling gutted, after your decades of advocacy and practical steps taken to develop a useful service for pwME in Suffolk.

I had never heard of 24 hrs a week but it may relate to the following: Specific Company Policy: An individual company might have an internal policy that grants full-time benefits (like health insurance or paid time off) to employees working 24 hours, but this is a business-specific definition...

When I was working on the James Lind PSP, Russell was also a member of the group. At the time IIRC he said he was working 24 hrs per week for MEA which was considered full-time.

This is dreadful, does anyone know anything about the 3 people in their new Healthcare team, such as previous roles/employment/knwledge of ME.. Are you planning to email the Trustees about this formally?

I wonder if Sarah Tyson will be presenting her "amazing" forms etc....

Thanks Andy, some of the members of the ME group I belong to, live in Kent. I wonder if they can get any PPI involvement in selection or provide input for what a useful service would provide.

Just a reminder that this survey closes on 27 Jan. The results will be a great resource for further advocacy and although it does not specifically ask where you have attened an ME clinic, there are plenty of open text opportunities to expand on your experience.

The AfME Big Survey does cover Healthcare: Q 19-31. Although it doesn't ask which service/clinic etc is local or has been attended, there is plenty of scope to add more narrative. Survey needs to be completed by 27 Jan and is an important opportunity to get across the reality of life with ME...

The original PIP application listed all the things she could not do repeatedly, reliably etc. We spent months on this using the excellent work and benefits info. Her Mandatory reconsideration itemised again where she should have scored more points. Her appeal letter summarised the above and said...

My daughter has recently sent off her appeal application form, as nothing was changed at mandatory reconsideration. She was awarded the lower rate for the mobility award, which is OK, but only 6 points for the daily living component. She can currently manage, as she lives with us, but we are...

I came across this dreadful piece from the Priory recently while looking into aspects of this journal edition. https://www.priorygroup.com/blog/understanding-somatoform-disorder It is terrifying. No wonder Bob was desperate to escape and to find specialists who understand ME.

@Robert 1973

I have now read the article and think you have done an excellent job, within the constraints you were under. Thank you again for spending your time being involved with this process.

My daughter is on Daridorexant and melatonin. The D gets her to sleep much quicker, she wakes much less often and when she does wake it enables her to get back to sleep more quickly. She doesn't feel any more refreshed in the mornings and it still takes a couple of hours at least for her to...

Thank you so much @kacheston for taking this opportunity.

"As a guide to management it raises as many questions as it answers. Much remains to be resolved before guidance that is both evidence based and acceptable to all parties is achieved." They do love the "evidence based trope" and "acceptable to all parties" means aligns with their BPS views -...

So, residents of Ashfield, (wherever that is), who have ME will be directed to the pain management team. We know how useful the NICE guideline on chronic pain was: exercise, acupuncture and cutting down on pain meds.

Danny Altmann did apply to NIHR to expand WILCO to cover a group of pwME back in autumn 23, but it was turned down.

I also came across this little gem praising the Leeds inpatient treatment for those with CFS, referring to the crass article by Alastair Miller, Garner et al...

@MEMarge could you post direct links for your second and third posts as I can't find the source. Hi, link is: https://www.leedsandyorkpft.nhs.uk/our-services/national-inpatient-centre-psychological-medicine-nicpm/ apologies for delay, I haven't been on here much recently.