U.K.
England, Scotland, Wales, & Northern Ireland
We have organized this list by the criteria used by each organization, as determined by information within their website.
While some organizations may not specifically state which criteria they use, most give information on what primer to use or how to get a diagnosis. We are categorizing them by what diagnosis or primer is used.
For those that aren't clear they are in the "Undetermined" category.
While some organizations may not specifically state which criteria they use, most give information on what primer to use or how to get a diagnosis. We are categorizing them by what diagnosis or primer is used.
For those that aren't clear they are in the "Undetermined" category.
CCC Organizations
Canadian Consensus Criteria (labeled ME/CFS) precursor to ICC.
The Grace Charity for M.E.
"... To promote the international links with individuals, groups, medical professionals and researchers in ME/CFS or ME/CFS linked illnesses..."
Trustees: Catherine Jane Elizabeth Ashenfelter, John Mark Ashenfelter, David Robin Laker
Charity out-of-date - England
"... To promote the international links with individuals, groups, medical professionals and researchers in ME/CFS or ME/CFS linked illnesses..."
Trustees: Catherine Jane Elizabeth Ashenfelter, John Mark Ashenfelter, David Robin Laker
Charity out-of-date - England
NICE 2007 Organizations
NICE Guidelines (29 October 2021) Note: The NICE guidelines are based on the 2015 U.S. IOM Report, Beyond ME/CFS - Redefining an Illness, which is an umbrella criteria based on ME & CFS research. This combining led to leaving out much of what makes ME a distinct disease.
M.E. Support UK
"M.E. Support is one of the leading websites on Myalgic Encephalomyelitis providing information, advice and support. ... Alongside my work here at M.E. Support, I run a Social Group for people living with M.E. and related conditions in Bexhill-on-Sea, East Sussex."
Founder: Louise Sargent
England
"M.E. Support is one of the leading websites on Myalgic Encephalomyelitis providing information, advice and support. ... Alongside my work here at M.E. Support, I run a Social Group for people living with M.E. and related conditions in Bexhill-on-Sea, East Sussex."
Founder: Louise Sargent
England
The Myalgic Encephalopathy Association Limited (ME Association)
"The ME Association provides information and support about myalgic encephalomyelitis/encephalopathy or M.E. to people affected by the disease."
Board of Trustees: Dr Charles Bernard Shepherd, Ewan Stuart Dale, Neil Harrison Riley, Rick Osman, Nicki Strong, Martine Ainsworth-Wells, Nicola Anson
Registered Charity - England, Wales, Northern Ireland, Scotland
"The ME Association provides information and support about myalgic encephalomyelitis/encephalopathy or M.E. to people affected by the disease."
Board of Trustees: Dr Charles Bernard Shepherd, Ewan Stuart Dale, Neil Harrison Riley, Rick Osman, Nicki Strong, Martine Ainsworth-Wells, Nicola Anson
Registered Charity - England, Wales, Northern Ireland, Scotland
Undetermined Criteria
Action for ME
"Our mission is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure."
Board of Directors: Clare Francis, Martin Arber, Sonya Chowdhury, Ruth Richardson
Board of Trustees: Roger Siddle, Matt Symonds, Philip Marsden, Chris Cundy, Jane Young, Jane Stacey, Andy Dougan, Sue Hardy, Colin Batten, Ed Stephens, Phil Murray, Alison Deeth, Lucy Goodwill
Registered Charity - England, Wales, Northern Ireland, Scotland
"Our mission is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure."
Board of Directors: Clare Francis, Martin Arber, Sonya Chowdhury, Ruth Richardson
Board of Trustees: Roger Siddle, Matt Symonds, Philip Marsden, Chris Cundy, Jane Young, Jane Stacey, Andy Dougan, Sue Hardy, Colin Batten, Ed Stephens, Phil Murray, Alison Deeth, Lucy Goodwill
Registered Charity - England, Wales, Northern Ireland, Scotland
Blue Ribbon for the Awareness of ME
"... To promote the international links with individuals, groups, medical professionals and researchers in ME/CFS or ME/CFS linked illnesses..."
Chair Persons: Tanya and Christine Harrison
Current?
"... To promote the international links with individuals, groups, medical professionals and researchers in ME/CFS or ME/CFS linked illnesses..."
Chair Persons: Tanya and Christine Harrison
Current?
Invest in ME Research
"Invest in ME Research is an independent UK charity finding, facilitating, and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS), and promoting better education about ME."
Board of Trustees: Kathleen Elizabeth McCall, Richard Simpson, Elizabeth Margaret McCall, Joyce Wood
Registered Charity - England & Wales
"Invest in ME Research is an independent UK charity finding, facilitating, and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS), and promoting better education about ME."
Board of Trustees: Kathleen Elizabeth McCall, Richard Simpson, Elizabeth Margaret McCall, Joyce Wood
Registered Charity - England & Wales
ME Research U.K.
"The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS)."
Board of Trustees: Robert McRae, Dr Vance Spence, Jonathan Davies, Sue Waddle, Jan McKendrick, Ed Dunkerley, Prof Faisel Khan, Lesley Carr, Dr David Newton, Dr Louise Crozier
Registered Charity - Scotland
"The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS)."
Board of Trustees: Robert McRae, Dr Vance Spence, Jonathan Davies, Sue Waddle, Jan McKendrick, Ed Dunkerley, Prof Faisel Khan, Lesley Carr, Dr David Newton, Dr Louise Crozier
Registered Charity - Scotland
ME Support in Glamorgan (MESiG)
"... supporting those with M.E/C.F.S or Fibromyalgia. We have been established since 1988, revived and renamed in 2004/2005 by a small group of volunteers with personal experience of M.E or Fibromyalgia who wanted to see change."
Committee: Deirdre Penny, Miriam Wood, Linda Tatham, Mary Jones, Mark Morgan
Wales
"... supporting those with M.E/C.F.S or Fibromyalgia. We have been established since 1988, revived and renamed in 2004/2005 by a small group of volunteers with personal experience of M.E or Fibromyalgia who wanted to see change."
Committee: Deirdre Penny, Miriam Wood, Linda Tatham, Mary Jones, Mark Morgan
Wales
Welsh Association of ME and CFS Support (WAMES)
"The Welsh Association of ME & CFS Support is a charity which gives a national voice to people with ME & CFS in Wales, their carers and families, in order to improve services, access to services, awareness and support."
Board of Trustees: Jan Russell, Tony Thompson, Liz Chandler, Sylvia Christine Penny, Michelle Elinor Penny
Registered Charity - Wales
"The Welsh Association of ME & CFS Support is a charity which gives a national voice to people with ME & CFS in Wales, their carers and families, in order to improve services, access to services, awareness and support."
Board of Trustees: Jan Russell, Tony Thompson, Liz Chandler, Sylvia Christine Penny, Michelle Elinor Penny
Registered Charity - Wales
The Young ME Sufferer's (TYMES) Trust
"Tymes Trust is the only national ME charity dedicated to children and young people with ME and their families. Our entire team work pro bono and in 2010 we received the Queen's Golden Jubilee Award for Voluntary Service..."
Board of Trustees: Keith Harley, Alec Western, Jennifer Whitlock, Sally Player
Registered Charity - Northern Ireland & Scotland
"Tymes Trust is the only national ME charity dedicated to children and young people with ME and their families. Our entire team work pro bono and in 2010 we received the Queen's Golden Jubilee Award for Voluntary Service..."
Board of Trustees: Keith Harley, Alec Western, Jennifer Whitlock, Sally Player
Registered Charity - Northern Ireland & Scotland
Undetermined Criteria - Severe Patients
Stonebird
"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters."
Founders: Greg & Linda Crowhurst
England
"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters."
Founders: Greg & Linda Crowhurst
England
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