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The CFS Research Foundation (UK) was a research only org - not a patient org.

One would also have to consider that although there will be some overlap in membership between AfME and the MEA, there will be members of MEA who would not be prepared to join AfME.

A merger was mooted in the period following the MEA's funding crisis during the 2004 post Val Hockey era, when it was touch and go whether the MEA could be kept afloat or would need to fold. Not a cat's chance in hell, I would wager, of Dr Shepherd agreeing to a merger with AfME. The MEA is run...

I would add that the MEA Board of Trustees has been happy to receive updates on ICD-11 and other classification systems for some years now, for which I receive thanks.

(Unofficially) because the then Chair of Trustees and at least one member of the Board of Trustees had considered at the time that I was a political threat to the stability of the organization and under their Mem & Arts, the MEA has the right to deny membership to anyone whom it deems unsuitable...

For more discussion on the MS Society and their sources of funding see: https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/#post-201226 JK Rowling donates £15.3m to Edinburgh MS research centre

Well, as someone who was denied membership of the ME Association, twice, in 2004, firstly via "Chair's Action" in between meetings of the Board of Trustees, and for the second application, following discussion of a minuted agenda item regarding my application at a Board of Trustees meeting, in...

This thread has been split from https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/ And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have...

Research Grants listed from Page 77 http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF

From the MS Society site: For just £5 per year, why not join the UK's biggest MS community? Add your voice to 29,000 others to help speak up about MS. Together we're stronger. So looks as though membership has fallen since that Guardian report. But still considerably higher than AfME and MEA...

From April 2009: https://www.theguardian.com/books/2009/apr/10/jkrowling-mutiple-sclerosis-scotland JK Rowling abandons Multiple Sclerosis Society charity amid in-fighting This article is more than 10 years old • Author no longer patron of Multiple Sclerosis Society • Conflict between...

By comparison (extracted from my Post #11 of this thread) From the Charity Commission register: https://apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithoutPartB.aspx?RegisteredCharityNumber=801279&SubsidiaryNumber=0 ME Association 801279 - THE MYALGIC ENCEPHALOPATHY...

Worth a quick skim of the most recent Annual Report & Accounts: MS Society Annual Report & Accounts Year end 2018 http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF Finance Review From Page 11 Income We are delighted that through the extraordinary...

My understanding is (but don't quote me on this in case it's no longer the case)* that the MS Society has local groups which fundraise, too. It also has charity shops around the country. It can afford to place ads for funding in papers like the Times. Money makes money. And what does the MS...

Compare the income of the MS Society with the income of UK registered ME charities: https://beta.charitycommission.gov.uk/charity-details?regid=1139257&subid=0 Year end 31 December 2018 Income £28.8M Spending £29.1M -------------------------- MS Society...

Indeed. I was not alone in considering the "Gibson Report" an embarrassment and disturbing that the Countess of Mar had been prepared to sign off on it. You still see it being referenced by some advocates in the UK and beyond, and that's disturbing too.

Be careful what you wish for. We were promised a full, independent, high level inquiry by Dr Ian Gibson back in 2005. What we got was the inadequate, unofficial, toothless, flawed, damaging and hastily cobbled together "Gibson Report" (2006) [1], which pretty much sunk without trace and without...

Next ICD-10-CM Coordination and Maintenance Committee meeting: March 17-18, 2020 Deadline for submission for March 17-18, 2020 C & M meeting: Deadline for requestors: members of the public requesting topics to be discussed at the March 17-18, 2020 ICD-10 Coordination and Maintenance Committee...

Today and Wednesday: U.S. NCHS/CDC meeting: ICD-10-CM Coordination and Maintenance Committee Meeting September 10-11, 2019 Proposals Part 1: https://www.cdc.gov/nchs/data/icd/Topic-packet-Sept-2019-Part1.pdf Proposals Part 2: https://www.cdc.gov/nchs/data/icd/Topic-packet-Sept-2019-Part2.pdf...

You might want to consider moving these posts to the existing thread: https://www.s4me.info/threads/mus-services-in-uk-and-other-mus-related-issues.8318/page-8 MUS services in UK and other MUS related issues rather than start another thread re MUS. Resources here too, on Phoenix Rising...