United Kingdom: reMEmber news

Merged threads
"The charity, reMEmber, for people with ME (Chronic Fatigue Syndrome), has been awarded the grant by the Sussex Community Foundation for its Clinical Network and Children’s Service Project."

https://www.midsussextimes.co.uk/ne...as-mid-sussex-charity-awarded-5-000-1-8900961

@Graham (might be of interest as is in your neck of the woods)

 

It is quite close to me, but I've never really known much about it. I tried getting in touch a couple of times, but didn't get anywhere.

 

I went to their conference in 2016 or 17, and am considering going this year if I have the energy. It’s a fair drive from where I live but I would like to hear Dr Muirhead speak.

The conference I went to was very well attended- speakers were Dr Bansal and Dr Shepherd- and well organised. It’s run by Janice and Bill Kent who attend Forward ME. I don’t know their connection with ME.

In the very early days after diagnosis in 2008 I was in touch with them and received a few copies of their magazine Re MEmber. I can’t really recall why I joined AfME instead ( head in hands). I seem to recall there were regular meetings of ReMEmber and it was too far to go regularly.

 

"There will be two expert presenters at the conference, Dr Charles Shepherd and Nina Muirhead who is a surgeon."

Those two names definitely sound encouraging.

 

Article in Midsussex times.
Chronic fatigue charity reMEmber's annual conference - all you need to know
I'm surprised they didn't object to the title.

https://www.midsussextimes.co.uk/he...s-annual-conference-all-you-need-know-2003415

eta:

huh?

 

Titles are very often the work of editors and not reporters / writers. I'd be surprised if they had any say in it.

 

Oh no, the link at the bottom is misspelt

Is there anyone from that org to tag here?

 

I have just mailed the newspaper

 

Also tried engaging the journalist herself via LinkedIn, because I can't find an email and don't use public Twitter

 

Not sure there are many members. The main thing they do is organise this annual event and turn up to Forward ME afaik.
Have sent them an email alerting them to the error.
Looks as though there is just an extra . after uk which is the problem.
www.remembercfs.org.uk

 

They've misordered the letters, making the link dead

http://www.rememberfcs.org.uk/

 

"We can run self-management courses for CFS/ME sufferers – these courses entail a two and a half hour session once a week for six weeks. We have just started half-day sessions on happiness for CFS/ME patients. Please get in touch if your [sic] interested.

Improving understanding of the condition by organising professional presentations for patients and carers. Giving ongoing support and information to patients, carers and professionals.

The Director was a member of the Chief Medical Officer’s Working Group on CFS/ME which has produced best practice guidance for professionals, patients and carers. reMEmber will act as a lobbying organisation to ensure that these recommendations are implemented. The Director is also a member of the Horsham and Mid Sussex Clinical Commissioning Group."​

They were set up by Janice Kent in 1999. Bill and Janice Kent attend Forward-ME meetings. The COM may be a Patron.

I don't know whether they still do, but they used to promote books by Trudie Chalder on their website.


" A leading expert is Dr Amolak Bansal, who has now retired and who has written guidance for doctors “Investigating Unexplained Persistent Fatigue with a Particular Emphasis on CFS/ME” which reMEmber helped to fund. It can be accessed free online at http://www.biomedcentral.com/1471-2296/17/81/email "

 

Their logo is




"The Chronic Fatigue Society" !!!!

 

Charity Commission Register:

https://apps.charitycommission.gov....teredCharityNumber=1077807&SubsidiaryNumber=0

(They are below the 10K threshold for having to provide Year End Accounts.


Financial year end (FYE): 31 Mar 2019

Income: £10,619

Spending: £6,545

Accounts received: Not Required

Annual Return/Annual Update received: 16 Jan 2020

Trustees:

CHARLES SPENCER TAYLOR
EMMA JANE REES
Dr SUSAN MARIAN DAVIES
SUSAN GILLMAN DEANE
RICHARD JOHN BURROWS

 

Their income is similar to that of TYMES Trust.

TYMES Trust:

https://apps.charitycommission.gov....teredCharityNumber=1080985&SubsidiaryNumber=0

I'm always surprised that TYMES Trust (with umpteen Peers, MPs, titled folk and celebs as Patrons) doesn't manage to bring in more funding. What purpose do these Patrons serve?

 

apparently they are perfectly OK with the Chronic Fatigue moniker

see United Kingdom: reMEmber news (link adjusted after merging of threads)

 

On the Charity Commission Register, they list their

Interests:

GIVING HELP AND ADVICE TO PEOPLE WHO SUFFER FROM M.E. (OTHERWISE KNOWN AS CHRONIC FATIGUE SYNDROME) AND THEIR CARERS. THIS INCLUDES CAMPAIGNING FOR BETTER SERVICES, WORKING WITH THE STATUTORY SERVICES TO IMPROVE SEREVICES [sic], RUNNING SELF-MANAGEMENT COURSES, ORGANISING PRESENTATIONS BY HEALTH CARE PROFESSIONALS AND OTHERS, ISSUING A QUARTERLY NEWSLETTER, AND A TELEPHONE HELPLINE.


Charitable objects:

THE RELIEF OF SICKNESS AND DISTRESS OF PERSONS SUFFERING FROM CHRONIC FATIGUE SYNDROME (CFS), OTHERWISE KNOWN AS MYALGIC ENCEPHALOMYELITIS (ME), AND FOR THAT PURPOSE TO ARRANGE AND, WHERE NECESSARY, FUND THE APPROPRIATE TREATMENT, AND FURTHER TO ASSIST IN THE REHABILITATION OF THOSE SUFFERING FROM CFS/ME


Other names:

REMEMBER (THE CHRONIC FATIGUE SOCIETY) (OLD NAME)
REMEMBER (WORKING NAME)

------------------

So the OLD NAME was registered as "REMEMBER (THE CHRONIC FATIGUE SOCIETY)"

So...why continue to use the term "The Chronic Fatigue Society" in their logo?

 

http://www.remembercfs.org.uk/about-mecfs/

". . . Informed medical opinion is that the infection causes “ripples” in the immune system which make it malfunction. Normally the immune system switches off after an infection has gone but in CFS/ME sufferers it seems to continue producing chemicals that interfere with the nervous and endocrine systems. Typically this results in prolonging the “flu-like” feeling which most CFS/ME sufferers experience frequently; some have it all the time."

Mmmm. No refs for the above statement.


"We can run self-management courses for CFS/ME sufferers – these courses entail a two and a half hour session once a week for six weeks. We have just started half-day sessions on happiness for CFS/ME patients."


I wonder what that involves? And "half-day sessions on happiness" - as in group sessions lasting three hours or so?


"We help people with ME (Myalgic Encephalomyelitis), also known as CFS (Chronic Fatigue Syndrome), to get the best possible treatment and advice to enable them to lead happy and healthy lives. . ."


It all sounds geared towards the mildly affected and those who feel able and receptive to attending half-day "happiness" sessions.

 

How many renditions of "if you're happy and you know it , clap your hands" and "Oh, I'm H. A. P. P. Y." could a person endure in the space of two and a half hours?

EDIT it all sounds quite "Brave New World"ish. One wonders when the soma gets passed around.

 

Just for you Chris, enjoy:



Creepy, eh?