Open Letters to Healthcare Professionals from people with ME/CFS – Part 10: Teri
Seeing what’s happened with Long Covid has been awful. It is also frustrating watching the scientific effort now to find a cure when M.E. has been ignored for so long…
Month: June 2021
BMJ Rapid Response Re: ME/CFS and Long Covid: Moving beyond the controversy – by Dr Charles Shepherd
An article by Melanie Newman was published in the British Medical Journal on 24 June, and included an interview with Dr Charles Shepherd (Hon. Medical Adviser to the ME Association). …
Oliver Payne – running to support his rugby-playing brother Joe, now stricken by M.E.
Rugby player Joe Payne got in touch to tell us about his younger brother Oliver, who is out pounding the streets every day for 100 days to raise money for …
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The Telegraph: Everything we know about long Covid
A new study reveals that a third of Covid sufferers in Britain have post-infection symptoms that persist for at least 12 weeks By Thea Jourdan for The Telegraph, 24 June, …
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Open Letters to Healthcare Professionals from people with ME/CFS – Part 9 Gaynor
The new NICE Clinical Guideline for ME/CFS will be published on 18 August and it has the potential to improve health and social care provision for people with this condition. In recent months, we have focused on drawing attention …
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The ME Association ME/CFS (& Long Covid) Weekly Research Round-up
The weekly research round-up now includes recent publications about ME/CFS and about Long Covid. We highlight several studies that have particularly caught our interest and follow these with the full …
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‘Medieval’ M.E. care on Isle of Man, says sufferer
Article from Isle of Man Today published 28 May 2021 A man who has lived with ME since 2010 says that the current level of health care for the condition …
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Emotions of carers who care for people with ME/CFS
Knowing how to care I wish I knew how to care, what he wants and needs. It’s like being a very bad mind reader at times. Over the years I …
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Karen smashed the Yorkshire Three Peaks
Karen Buckley challenged herself to climb the Yorkshire Three Peaks to raise money for the ME Association and she smashed them all at the end of May. She’s pictured at …
Proud finale for the lady who had beetled back home to Bolton!
Sarah Elsby is back in the fundraising frame – over a year since she first set out on six big walking challenges for the ME Association. Sarah, whose mother Lynn has …
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The challenges carers face when caring for people with ME/CFS
Pretending everything is Normal It took seven months for John to get an ME diagnosis. I think we were lucky. It got harder and harder trying to keep things normal …
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Guardian Article: I rested my way to recovery from long Covid. I urge others to do the same
Fiona Lowenstein writes in the Guardian of her experience of resting and pacing to recover from Long COVID and highlights the overlap with ME/CFS. I am not the first person to …
Situations Vacant: We want a Welfare Benefits Adviser to join our team
The ME Association is a national charity that supports, informs, campaigns, and invests in biomedical research for people with the neurological disease myalgic encephalopathy also known as chronic fatigue syndrome (ME/CFS). We are seeking a Welfare …
Situations Vacant: We want a Welfare Benefits Adviser to join our team Read More »
Open Letters to Healthcare Professionals from people with ME/CFS – Part 8 Andrew
I’m Andrew and have had ME/CFS for over 20 years. It’s been a difficult road, but you have seen me over that time to try to help. Some of you have been helpful and some have been understanding, and I thank you for that.
Being a carer for someone with ME/CFS
Are you a carer? I am. I am not a care worker; I am an unpaid carer. One day 13 years ago, out of the blue, my son collapsed and …
Long Covid and ME/CFS: Autoantibodies, neurotransmitters and autonomic nervous system dysfunction
The new paper in Nature looks at the possible role of two specific neurotransmitter receptor autoantibodies in Long COVID and ME/CFS
Guest Blog: The Shame
I’m ashamed to say I have M.E. I’ve collapsed in the street and when I’ve managed to explain that I don’t need an ambulance, it’s just M.E, I see the …
Open Letters to Healthcare Professionals from people with ME/CFS – Part 7 Nancy
Please be aware of the effects of going through the peri-menopause, and then the menopause, for women with ME.
ME/CFS Priority Setting Partnership: 2 weeks to send research ideas
But who are they? The ME/CFS Priority Setting Partnership is run by a steering group of people with ME, carers and clinicians. The project is funded by some of the …
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Win a beautiful quilt stitched by people from the M.E Community for a price of £1 per ticket!
If you’d like to purchase a raffle ticket on Sunday you can do so using Fiona’s Just Giving link: