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MS Society https://www.mssociety.org.uk/care-and-support/resources-and-publications/publications-search/ms-in-the-uk MS in the UK We estimate there are approximately 100,000 people with MS in the UK. And that each year 5,000 people are newly diagnosed with the condition. This means around one...

Compare the income of the MS Society with the income of all UK registered ME charities combined: https://beta.charitycommission.gov.uk/charity-details?regid=1139257&subid=0

I don't know, Cinders66, but I also took it to mean the former. From the Charity Commission register: https://apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithoutPartB.aspx?RegisteredCharityNumber=801279&SubsidiaryNumber=0 As you see, the MEA's annual income is...

From Page 13 of the year end accounts for 2017: https://apps.charitycommission.gov.uk/Accounts/Ends79/0000801279_AC_20171231_E_C.pdf THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED (A company limited by guarantee) TRUSTEES' REPORT (continued) FOR THE YEAR ENDED 31 DECEMBER 2017 FUNDRAISING...

The ME Patient Foundation website remains online but now carries this announcement: "PLEASE NOTE THAT THE CHARITY IS CURRENTLY DISSOLVING AND WILL NO LONGER BE IN OPERATION"

Followers of this thread might also want to keep an eye on this new thread: https://www.s4me.info/threads/medium-blog-could-pem-be-a-symptom-of-neural-strain-jennifer-brea-september-2019.11138/ Medium Blog: 'Could PEM be a symptom of neural strain?' Jennifer Brea, September 2019 Extract: "In...

A position statement from the Board of Directors of MEAction is long overdue.

"Michaela [sic] has severe ME due to CCI..." "My ME symptoms were most certainly a function of CCI and tethered cord"

It appears that the Tweet in post #627 has now been deleted by Ms Brea.

This from Jen Brea, figurehead and co-founder of MEAction, 9 hours ago: [Edited to add: Tweet has since been deleted.] I am concerned with the way in which crowdfunders for individuals diagnosed with hEDS and CCI are co-opting the term "severe ME". And here we have Brea, herself, stating...

There is now a copy of the statement on Claudia and Geoff's blog: https://uttingwolffspouts.com/2019/09/04/the-me-patient-foundation-statement/ The ME Patient Foundation Statement

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/816777/CC3_may18.pdf Charity Commission for England and Wales Guidance: The essential trustee: what you need to know, what you need to do

Sarah94, I'm afraid I cannot field questions on behalf of Claudia and Geoff.

GoogleDocs Link: http://bit.ly/statementMEPF PDF version attached Concerning The ME Patient Foundation, 4th September 2019 It is with deep regret that we are issuing this statement regarding the closure of The ME Patient Foundation shortly after its launch on 1st July 2019. Despite our...

A statement from trustees is being prepared. When it has been finalised, a copy is being forwarded to me for posting here.

https://www.sciencedirect.com/science/article/pii/S021265671930191X Atención Primaria Available online 8 June 2019 In Press, Corrected From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis...

Merged thread Moderator note: Message copied from this thread. https://www.s4me.info/threads/neurasthenia-modern-malady-or-historical-relic-2019-overholser-et-al.11031/#post-198294 https://www.sciencedirect.com/science/article/pii/S021265671930191X Atención Primaria Available online 8 June...

One last point, as followers of this thread will be aware, SNOMED CT UK Edition is now the mandatory terminology system for use in NHS Primary Care, having replaced the retired Read Code (CTV3) terminology system. SNOMED CT is planned to be rolled out across all NHS secondary care settings from...

You're welcome Amw66, and now I must step back. However, I will return to this thread to update when WHO has released the Chapter 06 specialty publication: "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders" and the 27...