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Very NICE..LY put! I always have believed in the art of the possible. For 25 years East Anglian groups have collectively worked systematically and relentlessly to hold matters to account. Recommend any area groups refer and use Local Authority Health Scrutiny and Overview democratic services...

ME Local Network are becoming an effective voice for Groups and refer to the lived experience. They have good, experienced, local charity support groups leads, active with the delivery plan and Forward ME. I am an old sceptic,.... but have been hugely encouraged by the teams recent efforts...

We wanted to return to our previous clinical model around 2000, which haematologist, Dr Terry Mitchell had developed. 1. Focus on Severely affected 30% of referrals. 2. Domiciliary support 3. Support for work, benefits and education needs with care plans in place to assist. 4. Support and...

Comment. 2 RF has not been operating in good faith. He has been like a magpie! Dipping in and dipping out. Wheeler dealing and trade our wares. If 'our wares' were really good, then maybe no harms would be done. But, we lost control of our wares in May 2024 * by ICB excluding 2 of us) and...

Comment 1. Well explained. I went to the ICB Board meeting with concerns over MEA ELeros and Tyson's trade proposals and appeals to make good use of their Apps. This was after the July 2025 Web Seminar from which I was excluded attendance and denied a recording by MEA. They have blanked my...

Someone needs to tell her Trish........ . !

I have the film 'Denial', staring Timothy Spall.... about an author being sued for libel. It's a real lesson on the libel law, both here and in America. https://en.wikipedia.org/wiki/Denial_(2016_film)

SNEE Board meetings are more generally around 3 hours sometimes 4....hours. It's a very long time to wait to ask unannounced questions in public (on agenda items). .... But worth the wait, to drop a 3 4 minute bomb or 2,.... or even the odd compliment! Do it nearly every meeting! GETs...

I know of one Suffolk based member who attended and has given me a little feedback.

..by 'here'..do you mean on S4ME? Or somewhere else?

Would appear so.....

I bet, undid all his good work on the 2004 National Framework for Long Term Conditions under minister, Alan Milburn....

Thanks.... On the other hand, I did raise the issue in questions from public at ICB meeting. At Essex University.... which was recorded and is still on line..... Dissatisfaction and disrespect, It needs to be put in public...

In confidence please - my email of 24th July 2025 to which, as yet, I have received nil response. ‐-------------- 'Date: Thu, 24 Jul 2025, 08:12 Subject: [LocalME] Seminar recording release To: Russell Fleming <russell.fleming@meassociation.org.uk> Cc: , (SNEE ICB) Charles Shepherd...

I have emailed them. Response, there has been none....! Even MEA CS and TB do not seem to be au fait.....

Not sure, but trustees and medical advisors in MEA don't seem to be any the wiser. Some fully paid up charity employees keep matters very much close to their chests, it appears from our observations. And seem to be given a free reign.....

Thank you for these observations. As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal...

Everyone needs to pile on on MEA Facebook page which invites comments, counter Kent Sussex/ BACME MEA Eleros Tyson steer....... Colin C is doing a resounding PR campaign....

I knew that MEA had 'facilitated' this.... The clues are in the Tender Documentation.... I'm glad our years of campaigning and intensive effort from 2022 to 2024 is, at least being used ...and appreciated, even though MEA are claiming much of the credit!

Long COVID involves activation of proinflammatory and immune exhaustion pathways- Nature