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.
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.
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.
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?
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.
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 👀
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.
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.
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?
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.
:-)