Excellent piece. I am a carer to a person with severe m.e. So much we relate to. We have experienced the gaslighting and patient blaming the psychologisation of what is clearly a biological illness and the lack of treatment options other than breathing techniques, mindfulness and suggestion to push through debilitating symptoms with anti depressants. Indeed from my reading around the experiences of those with severe m.e. and those who care for them as well as our own experiences, it seems that the only possible explanation in the minds of many in the health service for a patient this ill must be an undiagnosed mental illness.
Thank you for this article. As someone with moderate ME/CFS, the specialist ME/CFS clinic I see here in the U.S. doesn’t know what to do with me bc I’m not mild or easily treatable. Shudder to think of the severe patients who try to get treatment
Thank you for this. I want to point out that Dr. Alain Moreau, PhD, Lead of the Montreal ME/CFS Collaborative for Open Medicine Foundation, is also researching Severe ME/CFS patients who are bedridden in his 11 MicroRNA research. He goes to them to stimulate mild PEM in their homes, and takes blood and other objective measurements.
There are lots of interesting ideas in the plan. I'm reading it with no kind of background in marketing, communications or charity/non-profit work. I'd be very interested to hear what ME charities say in response and to what extent they have identified some of these issues themselves or are working towards tackling them already. Also what kind of obstacles ate preventing them from making more progress.
It should be published in national as well as medical papers. The best insight into the world of LongCovid and ME sufferers and their families
Excellent piece. I am a carer to a person with severe m.e. So much we relate to. We have experienced the gaslighting and patient blaming the psychologisation of what is clearly a biological illness and the lack of treatment options other than breathing techniques, mindfulness and suggestion to push through debilitating symptoms with anti depressants. Indeed from my reading around the experiences of those with severe m.e. and those who care for them as well as our own experiences, it seems that the only possible explanation in the minds of many in the health service for a patient this ill must be an undiagnosed mental illness.
Excellent piece - l agree that it should be published if at all possible. Happy to support if needed. 💙🫂🙏
Thank you for this article. As someone with moderate ME/CFS, the specialist ME/CFS clinic I see here in the U.S. doesn’t know what to do with me bc I’m not mild or easily treatable. Shudder to think of the severe patients who try to get treatment
Thank you for this. I want to point out that Dr. Alain Moreau, PhD, Lead of the Montreal ME/CFS Collaborative for Open Medicine Foundation, is also researching Severe ME/CFS patients who are bedridden in his 11 MicroRNA research. He goes to them to stimulate mild PEM in their homes, and takes blood and other objective measurements.
Another excellent piece that deserves to be published more widely - like most these weekly posts.
"We need the NHS and the government to step up with urgent funding"
A noble goal but most disease research is almost entirely funded by charity donations.
I've written a step-by-step plan explaining how ME/CFS charities can achieve that.
Please comment on it with your thoughts: https://docs.google.com/document/d/1sd-UK6BO1vXfn8842CVdeEM7YZ_LgejaX6zzYq8hB7M/edit?usp=sharing
Has this been shared or discussed with existing ME charities? What has their response been?
Not yet
There are lots of interesting ideas in the plan. I'm reading it with no kind of background in marketing, communications or charity/non-profit work. I'd be very interested to hear what ME charities say in response and to what extent they have identified some of these issues themselves or are working towards tackling them already. Also what kind of obstacles ate preventing them from making more progress.
I'll ask them and report back