United Kingdom: ME Association news

I would entirely agreed. We can take an ICB horse to water, but you can't make them drink!
We want a clinical medical Service, not a therapy service.

 

So what is Chales Shepherd claiming to have been achieved? Sorry, I haven't had a chance to look at the source material.


Edit: I listened to Charles. I am unclear what he thinks has been achieved as yet.

 

Don't think so. Government one, due to size of the tender. (Over £1 million....)

 

Lots of chat and feedback. He has been very supportive over 2 years.
Did a cracking job with the crap Topic Paper/ Public Health 'needs' assessment. 2022, commissioned by our medical director.... as did late Derek Pheby. RIP Derek.

 

Jo, you may be approached by ICB to sit on a procurement panel as you are a 'local' medical!
Promise it won't be a League of Gentleman style!

 

Spoiler: comedy video

https://www.youtube.com/watch?v=-P69Pia_t94

 

Always happy to oblige.

 

Myalgic Encephalomyelitis & Chronic Fatigue Syndrome and Long Covid Service SNEEICS

This has now gone live today and can be found through the link below. The spec is available for anyone interested on request as opposed to putting it on there now.

Suffolk and North East Essex Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME&CFS) Combined Service - Find a Tender

 

FOCUS Groups Opportunity

'Thank you,

In regard to patient representation, while we do not have a designated patient representative, each focus group will include a diverse mix of past, current, and waiting patients.

These groups are facilitated by a co-production lead with additional strategic support to ensure all voices are heard and that each group remains focused on our goals.

We feel this structure allows us to capture a broad range of perspectives without relying on a single representative.

For those unable to attend the focus groups, we have requested that questions and comments be submitted via email in advance.

This allows us to review any key points ahead of time and incorporate them into the discussions where appropriate.

Kind regards

Lucy Ainsley (she/her)

Programme Manager – Long Term Conditions Population Health Management Lead for SNEE
My working hours are 8am – 6pm Monday to Thursday.

Website: suffolkandnortheastessex.icb.nhs.uk

 

I hope you are well and thank you for your patience. The engagement opportunity is now ready to share with patients and family carers for their input on the combined pathway, to help shape the service spec. This will be shared urgently with all patients and family carers on the current pathways, for their opportunity to feed in and share amongst their networks. We will also use wider communications.

You can find this using the Lets Talk SNEE platform, a dedicated place for people and communities to take part in discussions and service transformation. Please use the following link to view, share and take part: Transformation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME & CFS) and Long COVID-19 service pathway | Lets Talk SNEE


You may notice that this has replaced the page which was started following the 2021 NICE guidance, that yourself and the group contributed to previously. The team will use this engagement, and all insights, research and reports available to inform the new service spec.

In the time and scope for this transformation, at this late stage, I have advised this is the most appropriate method for this opportunity, and further work can be undertaken with people with lived experience to commission and evaluate the services moving forward, as agreed and planned by ICB colleagues.

Best wishes,
Su

 

https://www.letstalksnee.co.uk/me-c...rome-me-cfs-and-long-covid-19-service-pathway

 

https://www.letstalksnee.co.uk/me-c...rome-me-cfs-and-long-covid-19-service-pathway

 

I wonder what people think of this.
It acknowledges a need to provide a service for severe patients.
But otherwise it looks very much like a whitewashed multidisciplinary BACME programme with a notional doctor somewhere in the background.
The amount of empty bureaucratic language is extraordinary but I guess standard now.

 

The @MEAssociation published an article by their Chairman in the ME Essentials Magazine in which he condescends and mocks ME patients.

I’m utterly astonished that they felt it was appropriate to publish this.

Thank god I withdrew as one of their
'Champion Bloggers'.

#PwME

More discussion of the MEA Chairman's articles and the MEA's responses to criticism of them here:
https://www.s4me.info/threads/united-kingdom-me-association-governance-issues.42093/page-8

 

Expect it's been posted on one of the threads - will delete if it has:

Full time Fundraising Officer: 25-27K

https://twitter.com/user/status/1858528191595307128



Situations Vacant: Fundraising Officer - CLOSING DATE: Monday 25th November 2024 The ME Association are looking for a highly organised person to join our Fundraising Team. As Fundraising Officer, you’ll play a vital role in securing funding to help people with ME/ CFS, making a positive difference to thousands of peoples lives. Apply via our listing on CharityJobs - https://charityjob.co.uk/jobs/the-me-association/fundraising-officer/994209… #MECFS #MyalgicEncephalomyelitis #LongCovid #JobVacancy #JobOpportunity #FundraisingOfficer #Fundraising

 

I just looked

they didn’t post this (that I could see) they’re currently fighting another fire they accidentally started @Trish does this need its own thread or is this thread the right one please?

The post is about the University of Derby Long Covid research team winning an award. The MEA posted below saying University of Derby Hospital Trust is merging ME/CFS and Long Covid Services. There is a link “Chronic Fatigue Syndrome UDHT”

The MEA then posts “oh dear- the patient info leaflet is very out of date and still recommending GET, we will write to Derby tomorrow -CS”

The MEA then sub posts on its own comment
“graded activity/exercise
Physical activity is important for general health, reducing fatigue and pain, increasing muscle strength, improving concentration and helping sleep. A programme of physical activity or exercise with manageable levels is agreed where appropriate to each individual.”

 

No that’s why I do screenies. I’ve added the text now.

 

https://www.facebook.com/meassociat...SJhWTDstTwBQFnDpyrm3QcnvWkWcQSvl?locale=en_GB