The Undefeatable Campaign: “I Sometimes Feel Defeated By My Disability – And That’s Okay,” by Pippa Stacey | 02 October 2019
Pippa explains what this national campaign has meant to her and we update on a recent meeting with Sport England.
2019
M.E., Dysautonomia and Me by Naomi Gilchrist | 01 October 2019
M.E., Dysautonomia and Me by Naomi Gilchrist | 01 October 2019 Read More »
Naomi talks about her recent diagnosis and how it compounds her daily struggles with M.E.
The Disability Passport: A useful item to have if you are still able to work, or considering a return to work | 20 September 2019
Dr Shepherd reviews the evidence for using disabled passports at work.
How to Survive University with M.E. – The ME-friendly packing list! By Emily Bailey | 13 September 2019
Emily tell us about some of the things that have helped make her university experience more tolerable.
Forward ME: Medical Colleges have important role to play in encouraging clinicians to listen to patients | 11 September 2019
These are the minutes from the recent Forward ME meeting in July 2019.
Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron | 09 September 2019
We all owe an enormous debt of gratitude to Peter. He will be sadly missed and I will be attending his funeral on Friday 13th September in Edinburgh.
“I am a teacher, but M.E. has taught me who I really am,” by Lorna McFindlow | 06 September 2019
M.E. has taken Lorna out of the classroom but there’s more to an identity than a career.
M.E. charity representatives meet with Scotland’s NHS to discuss future provision | 05 September 2019
Ewan Dale reports on a recent meeting to discuss the future of healthcare in Scotland.
ME Association August Summary of ME/CFS Published Research | 03 September 2019
ME Association August Summary of ME/CFS Published Research | 03 September 2019 Read More »
We’ve updated the central Research Index and feature 16 ME/CFS research studies from August 2019.
NICE Guideline Review: Call for Evidence | 02 September 2019
NICE Guideline Review: Call for Evidence | 02 September 2019 Read More »
NICE is asking stakeholders for evidence to support the ongoing review. The deadline is 4th October by 5pm.
Canada invests $1.4M in biomedical research to improve the quality of life of people living with M.E. | 23 August 2019
It is estimated that more than 580,000 Canadians live with myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome.
Relationship between physiotherapists and people with M.E. is poor but there is potential to improve | 22 August 2019
Physios 4 ME report on the results from the MEA website survey that took place in July.
Establishing Protocols to Assess Mitochondrial Function in ME/CFS by Dr Karl Morten | 21 August 2019
Dr Morten provides additional comment on the recent validation attempt of the Acumen test and we include a detailed report.
Very Severe ME: It’s Time for Something New! By Greg Crowhurst | 16 August 2019
Very Severe ME: It’s Time for Something New! By Greg Crowhurst | 16 August 2019 Read More »
I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years.
The Telegraph: Narrow doors and no hoists: why disabled women can’t have life-saving cervical cancer screening with Jo Moss | 10 August 2019
All women are invited to cervical screening, and all women should be able to have access to a test.
Independent researchers determine mitochondrial test is unreliable and should not be used as test in ME/CFS | 09 August 2019
The long-awaited independent assessment of Dr Myhill’s mitochondrial function test was published earlier this week.
The Sun: TRAPPED I’ve spent six years in a dark bedroom after virus triggered ME at 16 – but docs say it’s ‘all in my head’ | 09 August 2019
Laura, now 25, has chosen to lay bare the brutal reality of life with M.E. – which affects 250,000 people in the UK.
Severe ME Day: Life in a Nursing Home, Light Sensitivity and Very Severe M.E. by Eira Stuart | 08 August 2019
The nursing home was accommodating at first. However, they didn’t have any experience caring for M.E patients and I don’t think they fully realised the extent of the situation.
Severe ME Day: ‘LIFE’ with Very Severe M.E. – A poem by Natasha Adams | 08 August 2019
Severe ME Day: ‘LIFE’ with Very Severe M.E. – A poem by Natasha Adams | 08 August 2019 Read More »
Day after day this fragile hope is crushed, shattered, ground down like broken glass. Monotony, drudgery, despair! How can I escape?
Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst | 08 August 2019
Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst | 08 August 2019 Read More »
The impact of these last three decades of attempts to bury the serious disease M.E. under a sea of unrelated and vague “fatigue conditions” has been catastrophic for patients.