United Kingdom: Sussex & Kent ME/CFS Society News

So sad that people who could be powerful ambassadors in the field were/are not because Colin patient rep has got in their first telling them how great BACME & rehab is for CFS & how good the nhs service is, despite it explicitly, when I last looked, excluding the severely affected and no Treatments have emerged for those devastsd by the illness over a time period where Multiple Sclerosis has seen 20 disease modifying meds.
 
Trish said:
Oh dear. Awarding bodies need to do better investigation before giving out awards.
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As far as I can tell it’s an odd organisation, that seems to be funded by but also promotes small businesses and has some sort of magazine. Their website is an odd one too

Prestige Awards Nomination Form and Winners | Prestige Awards

The prestige awards allow you to showcase your business achievements within your community. The process is simple, submit your nomination first....
prestigeawards.co.uk prestigeawards.co.uk
Part of this media company
fenicemedia.com

HOME - Fenice Media

Fenice Media is a UK-based media group with an international presence, the company provides news & resources to the legal and travel sectors.
fenicemedia.com fenicemedia.com

So I’m not sure I’d call them an awarding body as much as a self promotion club
 
Dolphin said:
The charity that is considered to be a leader in the field has worked tirelessly for those who have been affected by Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (CFS) for over 35 years and continues to work closely with local NHS specialist services that the organisation
helped establish some years ago.
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Considered by whom? Not by the other ME charities or the ME community as a whole.

Their parasitic relationship with a narrow group of partisan clinicians/researchers with an identifiable specific bias is illustrated by their high number of medical advisors, larger than most national charities. Why have they, a local charity, had/have medical advisors based in Bristol, in Liverpool, etc with no obvious local connections? Why does it seem that they provided patient endorsement and patient advisors for research nationally, some projects taking place a hundred miles or more away.
 
Cinders66 said:
So sad that people who could be powerful ambassadors in the field were/are not because Colin patient rep has got in their first telling them how great BACME & rehab is for CFS & how good the nhs service is, despite it explicitly, when I last looked, excluding the severely affected and no Treatments have emerged for those devastsd by the illness over a time period where Multiple Sclerosis has seen 20 disease modifying meds.
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The service recently discharged me on the basis I am severely affected and they aren't commissioned for severe/very severe patients. They directed my friend who spoke to them on my behalf to the ME Association helpline (when she asked who was supposed to support me if they weren't).
 
CamTi said:
The service recently discharged me on the basis I am severely affected and they aren't commissioned for severe/very severe patients. They directed my friend who spoke to them on my behalf to the ME Association helpline (when she asked who was supposed to support me if they weren't).
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It’s astonishing that from 2007 these clinics were simply allowed to essentially put up a sign saying we don’t do severe m.e & get away with it. It would be interesting to know if it happens elsewhere in the NHS. I know dementia is poorly cared for medically and left to GP’s who are variable/ detached, I would be interested to know, when people become weak and housebound, with multiple sclerosis, What does their Care look like? And how comprehensive is it. Only by looking at other severe illness can we see what is standard and what is substandard
 
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