Thanks Emma for such a clear & objective overview.
Do you know if anyone has, or is developing, a screening tool for ME/CFS or maybe for PEM/PESE as a starting point for a prospective prevalence study (as opposed to relying on diagnostic codes)?
I guess the inclusion/exclusion criteria for current clinical research studies would be a starting point if not (I recognise it’s not straightforward).
Also - as one of the 2.7+million people who ‘know’ ME from the outside (sister, daughter, niece, colleagues), l was wondering if it’s possible to create an educational package that WE could personally deliver to GP practices in our own areas to raise awareness - a sort of ‘how much do you know about ME/CFS?’ prior to a prevalence study - maybe entitled ‘do you know how many patients in your practice have ME/CFS?’
Has anyone tried to register the online education package for CPD points? We used to run a Research Skills course (hospital based) and that had CPD points from the Royal College of Physicians. Maybe a carer/patient led education program could then highlight the clinical training course.
Sorry if this is a bit rambling - as a retired clinical research manager, whose daughter has severe ME, l’d like to do more to further ME awareness & especially research but struggle to know how best to do this.
I strongly support the CPD package offered by Action for ME (here: https://www.actionforme.org.uk/me-cfs-e-learning-and-cpd-for-professionals/ ) It has been funded by the Scottish Government and has been well-received by healthcare professionals here, although it's valid across the UK. Programmes like this are definitely shifting attitudes to ME.
Carol, I totally agree with the idea of trying to get GP practices to do the skills/education course. I was thinking of a coordinated FOI request first. Ask how many (if any) staff in the local GP has done the modules and how many people with ME/long covid do they have in their care. If the answer is no one has done the modules then we can recommend they do it and follow up in 6-12 months.
Sounds like a great plan - would you be able/happy to draft a letter we could share across the country - a sort of coordinated FOI request from local patient/carers/groups to each practice? I’m happy to do some ‘leg work’ too.
I don’t know how many people have ever recovered fully. In the first year if someone arrests it and spends the second year recovering, maybe they get back to something near their original capacity, but how many of these people are as healthy and robust as before? I don’t think any are. Some studies have stated that after the first year, recovery probability is in the single digits.
Another matter is of course the lack of awareness and support for people with ME. Action for ME will do more to help sufferers and their families but seems to have less funding and almost no staff at present. I believe they need extra financial support right now but I am not their representative to say that. ME Assoc. seems only able to signpost over the phone, generally. If there were ever enough money, it would help to run an ad campaign explaining what ME is and how badly it affects people and why we know it is not psychogenic.
Even post-concussion syndrome becomes very similar to ME because it follows a similar feedback loop of inflammatory damage causing a cascade of neuro chemical and hormonal changes and changes to soft tissue structures which makes blood and lymph flow impaired.
The postcode lottery aspect to being diagnosed and advised (there is no treatment) for ME is simply unacceptable. In my area the local services have shuttered as well as in the neighbouring county.
I think you're right that nobody ever fully recovers. That will require some type of medicine imo.
My brother became ill a few years after me when we were both teenagers (we're talking 20 years ago). Doctors forced GET & CBT on me. By the time my brother became ill, my parents knew the signs and most importantly what NOT to do. No GET, no CBT. Just rest and time to heal. Eventually he got better (albeit very slowly). Took him more than 6 years.
I'd say he recovered 90-95% and is able to live a relatively normal life now, but getting enough sleep is still key for him. I think he's the exception though, because very few people seem to be able to recover like he did. Meanwhile I went from mild before GET to moderate afterwards. And these days I'm no stranger to the severe phase of ME.
For what it’s worth, I did find treating POTS with Ivabradine, suspected MCAS with ketotifen, and muscle weakness with Mestinon/pyridostigmine extremely helpful when severe. Solidarity.
Also Wendy Boutilier /The Nightingale Continuum and Dr Hng’s CFS/ME Friends - all on Facebook are worth checking out regularly.
Wendy Boutilier’s detailed posts, with references, usually appearing on Dr Hng’s, are invaluable in explaining the mechanisms behind our many extreme symptoms. These are essential reading for our own personal research in order to strengthen our own advocacy.
If you’re fortunate enough to have a receptive GP Wendy’s information plus the references make the posts more acceptable on an academic level. Therefore doctors are more likely to take notice.
Wendy Boutilier has recently published Myalgic Encephalomyelitis: The Devil Is In The Details on Amazon. Paperback £10.47.
Hannah can I ask where those shuttered services are? I think I heard the Coventry service is closing, and I want to include that in my next email to my MP.
Had a referral which has gone no where since 2020 for Maudsley Hospital Chronic Fatigue Service. This was after getting removed from local services because they had to make room for the wave of post-infection damaged people after Covid. I know that children’s services closed in Sheffield, waiting to hear from my friend to verify that she lost access to adult services there as well. Leicestershire and Rutland closed. There had been services under psychiatry to learn to “manage” symptoms. Nottingham, Fibro/ME/Long Covid svcs… at least near the university - closed. And this is with people on waitlists. No notice of being lost to the aether when the waitlists disappeared with the clinics. Critically, some GPs are refusing to follow 2021 NICE guidelines to refer for multidisciplinary assessments in rheumatology, genetic medicine, cardiology, neurology, etc. or to rule out common comorbidities like POTS, hypermobility, and Myesthenia Gravis, instead saying that it is the ‘job’ of the ME/CFS services. So when patients wait years to access ME/CFS services, they often have to write to the GPs to order referrals or tests they should have in the first place. Sajid Javid wanted to make an ME/CFS task force when he was health secretary as he has personal experience with ME through a relative, but that was as quickly quashed. … also: Refusal to recognise Long Covid as a sub classification under ME/CFS and medics told to use the ICD name Chronic Fatigue Syndrome. Worth following Hillary Johnson here on Substack and reading her short book THE WHY if you haven’t already.
Interesting that the new Secretary of Health, Yvette Cooper had ME in the mid-2000s for about 2 years. She attended a couple of APPGs after her recovery. Her views on it today could be important for us. She believed it was post-viral at the time.
We absolutely need to get some good numbers on this. ME actually seems relatively common compared with official stats. I personally know at least six people with ME in my social circle who I did not meet through disability/ME groups, in addition to all those who I have met through disability spaces. Some of those people already had ME, some acquired it after I got to know them.
It took me four years to get a diagnosis from my GP and I have not been able to access specialist services. So many people will currently have ME without even knowing what's wrong with them.
It's maybe a bit extreme to call this a cover up, but certainly the neglect of proper diagnosis and accurate numbers means that those in charge of healthcare can continue to ignore what is a steadily growing patient population.
Thanks for the post. We do need better figures, it's unquestionable, and we need much more data on how to stratify the patient cohort by symptoms and cause too. But, from the point of view of advocacy, the existing numbers, even when viewed conservatively, are very bad. There is enough evidence already to justify MUCH more investment in ME research and services. More data will refine the picture but, to put it metaphorically, we already have a stick to beat the government with. A big stick.
Also, a shout out to CrunchME for feeding good data into the public domain.
Thank you for this writing. I think you’ve hit upon the problem for patients which is - what is the point of being diagnosed with something that people don’t believe you about anyway AND there is no treatment for. Coupled with the fact that many are too ill to attend and chase the repeated doctors appointments that seem to be required to exclude other illnesses and maybe end up with a diagnosis.
It’s also I think so difficult for Doctors to understand and I think some are unwilling to learn to change their thinking. Because it goes against everything they would normally recommend, get outside, do some exercise etc. So it requires a really serious attitude (and ego) shift in terms of not feeling able to help and understanding and knowing that the only way to stay alive is to rest deeply.
Thanks for this article Emma! One thing I think is vital to add to the data is how rapidly the number of people diagnosed with ME is changing and the reasons for the change. One thought I have is that ME has now become much more common due to a large number of people developing ME from a Covid infection
Another metric that would be useful to record is the length of time between someone first developing symptoms and receiving a diagnosis. I know for many conditions e.g. endometriosis this can be far too long. Also, how many people were able to get the diagnosis on the NHS and how many had no option but to go private?
I would imagine that the number diagnosed privately would be comparatively small because of the expense.
The majority of us had/have no option but to rely on the NHS.
It took 13 years before I could get a diagnosis of Severe ME. In 2006. I’m now Very Severe. Perhaps, if I had been diagnosed sooner, I might not have become Severe. I’m not convinced that full recovery to pre-disability capabilities is possible.
Thanks Emma for such a clear & objective overview.
Do you know if anyone has, or is developing, a screening tool for ME/CFS or maybe for PEM/PESE as a starting point for a prospective prevalence study (as opposed to relying on diagnostic codes)?
I guess the inclusion/exclusion criteria for current clinical research studies would be a starting point if not (I recognise it’s not straightforward).
Also - as one of the 2.7+million people who ‘know’ ME from the outside (sister, daughter, niece, colleagues), l was wondering if it’s possible to create an educational package that WE could personally deliver to GP practices in our own areas to raise awareness - a sort of ‘how much do you know about ME/CFS?’ prior to a prevalence study - maybe entitled ‘do you know how many patients in your practice have ME/CFS?’
Has anyone tried to register the online education package for CPD points? We used to run a Research Skills course (hospital based) and that had CPD points from the Royal College of Physicians. Maybe a carer/patient led education program could then highlight the clinical training course.
Sorry if this is a bit rambling - as a retired clinical research manager, whose daughter has severe ME, l’d like to do more to further ME awareness & especially research but struggle to know how best to do this.
I strongly support the CPD package offered by Action for ME (here: https://www.actionforme.org.uk/me-cfs-e-learning-and-cpd-for-professionals/ ) It has been funded by the Scottish Government and has been well-received by healthcare professionals here, although it's valid across the UK. Programmes like this are definitely shifting attitudes to ME.
Thanks Stoo - will take a look 👀
Carol, I totally agree with the idea of trying to get GP practices to do the skills/education course. I was thinking of a coordinated FOI request first. Ask how many (if any) staff in the local GP has done the modules and how many people with ME/long covid do they have in their care. If the answer is no one has done the modules then we can recommend they do it and follow up in 6-12 months.
Sounds like a great plan - would you be able/happy to draft a letter we could share across the country - a sort of coordinated FOI request from local patient/carers/groups to each practice? I’m happy to do some ‘leg work’ too.
I’ll look into it and will come back you!x
I don’t know how many people have ever recovered fully. In the first year if someone arrests it and spends the second year recovering, maybe they get back to something near their original capacity, but how many of these people are as healthy and robust as before? I don’t think any are. Some studies have stated that after the first year, recovery probability is in the single digits.
Another matter is of course the lack of awareness and support for people with ME. Action for ME will do more to help sufferers and their families but seems to have less funding and almost no staff at present. I believe they need extra financial support right now but I am not their representative to say that. ME Assoc. seems only able to signpost over the phone, generally. If there were ever enough money, it would help to run an ad campaign explaining what ME is and how badly it affects people and why we know it is not psychogenic.
Even post-concussion syndrome becomes very similar to ME because it follows a similar feedback loop of inflammatory damage causing a cascade of neuro chemical and hormonal changes and changes to soft tissue structures which makes blood and lymph flow impaired.
The postcode lottery aspect to being diagnosed and advised (there is no treatment) for ME is simply unacceptable. In my area the local services have shuttered as well as in the neighbouring county.
I think you're right that nobody ever fully recovers. That will require some type of medicine imo.
My brother became ill a few years after me when we were both teenagers (we're talking 20 years ago). Doctors forced GET & CBT on me. By the time my brother became ill, my parents knew the signs and most importantly what NOT to do. No GET, no CBT. Just rest and time to heal. Eventually he got better (albeit very slowly). Took him more than 6 years.
I'd say he recovered 90-95% and is able to live a relatively normal life now, but getting enough sleep is still key for him. I think he's the exception though, because very few people seem to be able to recover like he did. Meanwhile I went from mild before GET to moderate afterwards. And these days I'm no stranger to the severe phase of ME.
For what it’s worth, I did find treating POTS with Ivabradine, suspected MCAS with ketotifen, and muscle weakness with Mestinon/pyridostigmine extremely helpful when severe. Solidarity.
Also Wendy Boutilier /The Nightingale Continuum and Dr Hng’s CFS/ME Friends - all on Facebook are worth checking out regularly.
Wendy Boutilier’s detailed posts, with references, usually appearing on Dr Hng’s, are invaluable in explaining the mechanisms behind our many extreme symptoms. These are essential reading for our own personal research in order to strengthen our own advocacy.
If you’re fortunate enough to have a receptive GP Wendy’s information plus the references make the posts more acceptable on an academic level. Therefore doctors are more likely to take notice.
Wendy Boutilier has recently published Myalgic Encephalomyelitis: The Devil Is In The Details on Amazon. Paperback £10.47.
Hannah can I ask where those shuttered services are? I think I heard the Coventry service is closing, and I want to include that in my next email to my MP.
Had a referral which has gone no where since 2020 for Maudsley Hospital Chronic Fatigue Service. This was after getting removed from local services because they had to make room for the wave of post-infection damaged people after Covid. I know that children’s services closed in Sheffield, waiting to hear from my friend to verify that she lost access to adult services there as well. Leicestershire and Rutland closed. There had been services under psychiatry to learn to “manage” symptoms. Nottingham, Fibro/ME/Long Covid svcs… at least near the university - closed. And this is with people on waitlists. No notice of being lost to the aether when the waitlists disappeared with the clinics. Critically, some GPs are refusing to follow 2021 NICE guidelines to refer for multidisciplinary assessments in rheumatology, genetic medicine, cardiology, neurology, etc. or to rule out common comorbidities like POTS, hypermobility, and Myesthenia Gravis, instead saying that it is the ‘job’ of the ME/CFS services. So when patients wait years to access ME/CFS services, they often have to write to the GPs to order referrals or tests they should have in the first place. Sajid Javid wanted to make an ME/CFS task force when he was health secretary as he has personal experience with ME through a relative, but that was as quickly quashed. … also: Refusal to recognise Long Covid as a sub classification under ME/CFS and medics told to use the ICD name Chronic Fatigue Syndrome. Worth following Hillary Johnson here on Substack and reading her short book THE WHY if you haven’t already.
Thank you so much! God it really is in an awful state. And thanks, I’ll follow Hilary now
Umm do you have the name of her Substack please?
@Hillary Johnson The World of Osler’s Web
You might want to read this, as well. Even recent trials seem to be poorly designed, again. https://www.healthrising.org/blog/2026/07/23/uk-triple-treatment-long-covid-trial/
Interesting that the new Secretary of Health, Yvette Cooper had ME in the mid-2000s for about 2 years. She attended a couple of APPGs after her recovery. Her views on it today could be important for us. She believed it was post-viral at the time.
That’s really interesting
We absolutely need to get some good numbers on this. ME actually seems relatively common compared with official stats. I personally know at least six people with ME in my social circle who I did not meet through disability/ME groups, in addition to all those who I have met through disability spaces. Some of those people already had ME, some acquired it after I got to know them.
It took me four years to get a diagnosis from my GP and I have not been able to access specialist services. So many people will currently have ME without even knowing what's wrong with them.
It's maybe a bit extreme to call this a cover up, but certainly the neglect of proper diagnosis and accurate numbers means that those in charge of healthcare can continue to ignore what is a steadily growing patient population.
Thanks for the post. We do need better figures, it's unquestionable, and we need much more data on how to stratify the patient cohort by symptoms and cause too. But, from the point of view of advocacy, the existing numbers, even when viewed conservatively, are very bad. There is enough evidence already to justify MUCH more investment in ME research and services. More data will refine the picture but, to put it metaphorically, we already have a stick to beat the government with. A big stick.
Also, a shout out to CrunchME for feeding good data into the public domain.
:-)
Thank you for this writing. I think you’ve hit upon the problem for patients which is - what is the point of being diagnosed with something that people don’t believe you about anyway AND there is no treatment for. Coupled with the fact that many are too ill to attend and chase the repeated doctors appointments that seem to be required to exclude other illnesses and maybe end up with a diagnosis.
It’s also I think so difficult for Doctors to understand and I think some are unwilling to learn to change their thinking. Because it goes against everything they would normally recommend, get outside, do some exercise etc. So it requires a really serious attitude (and ego) shift in terms of not feeling able to help and understanding and knowing that the only way to stay alive is to rest deeply.
Thanks for this article Emma! One thing I think is vital to add to the data is how rapidly the number of people diagnosed with ME is changing and the reasons for the change. One thought I have is that ME has now become much more common due to a large number of people developing ME from a Covid infection
Another metric that would be useful to record is the length of time between someone first developing symptoms and receiving a diagnosis. I know for many conditions e.g. endometriosis this can be far too long. Also, how many people were able to get the diagnosis on the NHS and how many had no option but to go private?
I would imagine that the number diagnosed privately would be comparatively small because of the expense.
The majority of us had/have no option but to rely on the NHS.
It took 13 years before I could get a diagnosis of Severe ME. In 2006. I’m now Very Severe. Perhaps, if I had been diagnosed sooner, I might not have become Severe. I’m not convinced that full recovery to pre-disability capabilities is possible.