AFME provide new self advocacy support material

I find this worse than useless and certainly not something I would give to anyone to spread the word. Unless I wanted everyone to look at me strange as if I had some form of delusion.

Speaking as someone that didn’t get an infection but did have a period of running on adrenaline doing 3 people’s jobs for 6 months prior to onset ...and onset was gradual not sudden, I think i also wouldn’t want a biased “I got it from an infection and have proper me” type piece either...

It is tricky to encapsulate a dumbed down version since nothing fits neatly. I don’t think there is evidence either way as to onset that explains it all. All I can say is that depending upon which study you look at it looks like sudden vs gradual onset is about 50:50 or in that order so I don’t think avoiding everything but the infection route is very informative. I’m would argue for “stress” to be rephrased but not brushed away.

Perhaps rephrase to “...seems to follow a period of exhaustion triggered by infection or other metabolic or endocrine imbalances”

I equally don’t like the word stress being hijacked so this does need clarification ...just putting metabolic in front of it could suffice?
 
I'm sorry to have to say this, @Action for M.E. but I think the description of ME and its symptoms and possible causes on the first page is awful. It is wrong on several counts and is so dumbed down and watered down as to make ME sound like nothing I recognise. Take this for example:

The main symptom of M.E. is fatigue, both mental and physical, which feels different from normal tiredness. This fatigue can be made worse by small amounts of physical, mental activity and the symptoms may worsen over a 2-3 day period after the activity. This is known as post-exertional malaise and it is a key feature of M.E
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A lot of pwme do not list fatigue as their main symptom. Have you seen our recent member survey of their 3 most troubling symptoms aside from PEM, which is the core defining symptom of ME? It is not a scientific survey, but in the space of a week over 100 members filled it in, and the top two symptoms that our members found most disabling were 'cognitive dysfunction' (71%), 'muscle fatiguability, weakness and slow recovery' (57%) with 'chronic disabling fatigue' only chosen as a top 3 symptom by 48% of participants.
https://www.s4me.info/threads/symptom-survey-for-those-with-me-cfs.3720/

Under the heading 'What is ME' in a document addressed to professionals, the least you can do is give a proper definition of ME, listing PEM as the key symptom that distinguishes ME from the symptom 'chronic fatigue', and I think all definitions include chronic disabling fatigue and unrefreshing sleep, and either orthostatic intolerance or cognitive dysfunction as key symptoms.

And please don't belittle PEM is as 'worse fatigue'- as far as I'm concerned it's a crash into a flu like state of multi-symptom malaise and inability to function. If all I had was feeling more fatigued for a few days after activity I'd be delighted. 'And the symptoms may worsen' is dismissive and belittling of the lived experience.

And why so much focus on this:
With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical activity can have a big impact on the symptoms of M.E. Often too much stimulation from things such as noise or light can result in someone with M.E. feeling worse the next day
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That is not my experience except during PEM, and in our survey mentioned above, only 15% of participants chose 'Hypersensitivity to sound, light, smells, touch' as one of their 3 worst symptoms. In my mild ME years, I was fine with the stress of working and raising a family, but even a few minutes of extra physical activity would make me crash. Others find cognitive activity has the same effect.

I know some pwME are very sensitive to stress and/or external stimuli, and this is horrendously disabling for them, and I don't want to belittle this in any way, but it is not a core symptom suffered by everyone with ME, as I understand it, nor has central sensitisation which seems to be being described here ever been proven to be the cause of ME symptoms.

And, if you are going to mention biomedical stuff at all, why nothing about energy metabolism?

And as for this sentence in a document that is supposed to be addressed to professional, words fail me.
These systems are complex and operate at a deep level inside us.
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Some of the later pages that the patient fills in are potentially useful, but I personally have found daily activity diaries completely useless. They take no account of daily variability, and the effect of what you do one day on the next day - what I fill in is inevitably a fudge.

If you want a professional to get a snapshot of the level of disability, why not use the Bell Disability Scale, or the MEA disability rating scale instead of asking patients to fill out endless pages of useless information detailing hour by hour activity.

I really think it's time AfME stopped relying on Hazel O'Dowd as their 'expert' producing materials addressed to professionals. She seems to have a very skewed and limited understanding of ME.
 
I was just having a look at North Bristol NHS trust info and it wasn't looking too bad but I noticed this:

"Psychologists use a range of approaches and techniques including a specialist form of Cognitive Behavioural Therapy (CBT) developed for people with CFS/ME"

and in the recommended books:
"Overcoming Chronic Fatigue (2005)
Publisher: Robinson
Authors: Mary Burgess and Trudie Chalder"

and Websites:
"Action for ME
The Association of Young People with ME (AYME)
The British Association for Chronic Fatigue Syndrome/ME (BACME)
Access to Work www.gov.uk/access-to-work"

https://www.nbt.nhs.uk/our-services...syndromeme-service/chronic-fatigue-syndromeme

There is also info on the SEE M.E. Employment support project

"The pilot project, called Support, Empower, Employ M.E. (SEE M.E.), was delivered by the charity Action for M.E. in partnership with the Bristol CFS/ME Service here at North Bristol NHS Trust. The project, launched on 4 June 2015, ended in October 2016, and was open to people living with CFS/ME within Bristol, Gloucestershire and North Somerset. SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust."

https://www.nbt.nhs.uk/our-services...-syndromeme-service/see-me-employment-support


https://www.gov.uk/access-to-work
 
North Bristol trust are BACME. That's the problem with AFME, at every turn PACE collaboration, choice of medical advisor alistair miller previous, sister of ayme close with Crawley, working with hazel o dowd, this ... they're teaming up with the establishment, BPS lot. They re in Geneva so get WHO to accept the IOM definition and yet produce literature which doesn't use it
 
Trish said:
I'm sorry to have to say this, @Action for M.E. but I think the description of ME and its symptoms and possible causes on the first page is awful. It is wrong on several counts and is so dumbed down and watered down as to make ME sound like nothing I recognise. Take this for example:



A lot of pwme do not list fatigue as their main symptom. Have you seen our recent member survey of their 3 most troubling symptoms aside from PEM, which is the core defining symptom of ME? It is not a scientific survey, but in the space of a week over 100 members filled it in, and the top two symptoms that our members found most disabling were 'cognitive dysfunction' (71%), 'muscle fatiguability, weakness and slow recovery' (57%) with 'chronic disabling fatigue' only chosen as a top 3 symptom by 48% of participants.
https://www.s4me.info/threads/symptom-survey-for-those-with-me-cfs.3720/

Under the heading 'What is ME' in a document addressed to professionals, the least you can do is give a proper definition of ME, listing PEM as the key symptom that distinguishes ME from the symptom 'chronic fatigue', and I think all definitions include chronic disabling fatigue and unrefreshing sleep, and either orthostatic intolerance or cognitive dysfunction as key symptoms.

And please don't belittle PEM is as 'worse fatigue'- as far as I'm concerned it's a crash into a flu like state of multi-symptom malaise and inability to function. If all I had was feeling more fatigued for a few days after activity I'd be delighted. 'And the symptoms may worsen' is dismissive and belittling of the lived experience.

And why so much focus on this:


That is not my experience except during PEM, and in our survey mentioned above, only 15% of participants chose 'Hypersensitivity to sound, light, smells, touch' as one of their 3 worst symptoms. In my mild ME years, I was fine with the stress of working and raising a family, but even a few minutes of extra physical activity would make me crash. Others find cognitive activity has the same effect.

I know some pwME are very sensitive to stress and/or external stimuli, and this is horrendously disabling for them, and I don't want to belittle this in any way, but it is not a core symptom suffered by everyone with ME, as I understand it, nor has central sensitisation which seems to be being described here ever been proven to be the cause of ME symptoms.

And, if you are going to mention biomedical stuff at all, why nothing about energy metabolism?

And as for this sentence in a document that is supposed to be addressed to professional, words fail me.


Some of the later pages that the patient fills in are potentially useful, but I personally have found daily activity diaries completely useless. They take no account of daily variability, and the effect of what you do one day on the next day - what I fill in is inevitably a fudge.

If you want a professional to get a snapshot of the level of disability, why not use the Bell Disability Scale, or the MEA disability rating scale instead of asking patients to fill out endless pages of useless information detailing hour by hour activity.

I really think it's time AfME stopped relying on Hazel O'Dowd as their 'expert' producing materials addressed to professionals. She seems to have a very skewed and limited understanding of ME.
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Brava !
 
I think this part is very important in showing with the Psych group are going to now

"With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical activity can have a big impact on the symptoms of M.E. Often too much stimulation from things such as noise or light can result in someone with M.E. feeling worse the next day."

Before they had the deconditioning model but this shows that going to be concentrated in a new direction now. The Psych group are like a game of "whack a mole". If we work to close down one particular line they flow into a different one adopting new terminology to explain why their ideas on exercise work and why they should keep their jobs.

So out with deconditioning as the explanation for GET, GE, CBT, activity management, pacing or whatever label they want to use this week.

It's hypersensitivity which posters have already twigged as being part of the central sensitisation theory.

Dr Crawley in one of her talks said that gradually increasing exercise allows the body to slowly adapt to the changes - not because of any deconditioning would be my guess as to why she is talking this way, but because the body is now hypersensitised to exercise.

This explains why patients show changes on the two day test and in their immune systems after exercise. Any test we can now produce as an example of what happens after exercise can be used by them to justify their hypersensitivity claim.

The trick is obviously to either cut down on functioning until the patient reaches the mythical state of having no symptoms and then to slowly build up the activity so the "hypersensitised" body dampens down it's response.

It's never been a case of what the question is for the Psych lobby. It's been about them always have the answer.

It's a good idea but there is no basis in fact to support this and no medical evidence. It would need millions of pounds and another long clinical trial to proof or disprove. Once this is done then the same people will have retired or moved onto something new.

AFME would support this trial because obviously there are important questions to answer here and we all need to know.
 
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It's very different from the descriptions in the letter to WHO.

I myself had some success with very careful graded activity until I went too far too fast. I would like to see why this is so for some people, maybe it's simply that in tiny steps increasing strength allows the extra activity to be borne? Or allows the sick system to tolerate more, I don't know why it should be reversing energy production abnormalities or why those abnormalities recede naturally in some too. I say this with no scientific training. I suppose it makes sense that if inflammation or immune action is driving hints , those drivers can change over time sometimes?

Finding something that helps some people and then trying to understand why is not wrong. It became wrong when generalisations were made across a diverse group and when their theories were presented as fact, and their theories so wrong often.
 
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Cinders66 said:
It's very different from the descriptions in the letter to WHO.

I myself had some success with very careful graded activity until I went too far too fast. I would like to see why this is so for some people, maybe it's simply that in tiny steps increasing strength allows the extra activity to be borne? Or allows the sick system to tolerate more, I don't know why it should be reversing energy production abnormalities or why those abnormalities recede naturally in some too. I say this with no scientific training. I suppose it makes sense that if inflammation or immune action is driving hints , those drivers can change over time sometimes?

Finding something that helps some people and then trying to understand why is not wrong. It became wrong when generalisations were made across a diverse group and when their theories were presented as fact, and their theories so wrong often.
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Workwell foundation describe how very small amounts of very carefully managed activity of the right type can help with gaining some improvement in functioning in the people they work with who are at the milder end of the spectrum. They seem to take it very very slowly and within peoples capacities rather than GET which is a bog standard approach and seems to have no understanding of the type of aerobic activity that can be harmful to people with ME. So maybe when you were in the initial phase you were closer to the Workwell type approach.
 
Sly Saint said:
I was just having a look at North Bristol NHS trust info and it wasn't looking too bad but I noticed this:

"Psychologists use a range of approaches and techniques including a specialist form of Cognitive Behavioural Therapy (CBT) developed for people with CFS/ME"

and in the recommended books:
"Overcoming Chronic Fatigue (2005)
Publisher: Robinson
Authors: Mary Burgess and Trudie Chalder"

and Websites:
"Action for ME
The Association of Young People with ME (AYME)
The British Association for Chronic Fatigue Syndrome/ME (BACME)
Access to Work www.gov.uk/access-to-work"

https://www.nbt.nhs.uk/our-services...syndromeme-service/chronic-fatigue-syndromeme

There is also info on the SEE M.E. Employment support project

"The pilot project, called Support, Empower, Employ M.E. (SEE M.E.), was delivered by the charity Action for M.E. in partnership with the Bristol CFS/ME Service here at North Bristol NHS Trust. The project, launched on 4 June 2015, ended in October 2016, and was open to people living with CFS/ME within Bristol, Gloucestershire and North Somerset. SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust."

https://www.nbt.nhs.uk/our-services...-syndromeme-service/see-me-employment-support
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Those are the standard links from CFS/ME services. I’ve pointed elsewhere that sales of the Burgess/Chalder book are probably pretty much driven by them being referenced in the “workbook” you get given on the group programmes run by these clinics and resulting staff/patient purchases.
 
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NelliePledge said:
Workwell foundation describe how very small amounts of very carefully managed activity of the right type can help with gaining some improvement in functioning in the people they work with who are at the milder end of the spectrum. They seem to take it very very slowly and within peoples capacities rather than GET which is a bog standard approach and seems to have no understanding of the type of aerobic activity that can be harmful to people with ME. So maybe when you were in the initial phase you were closer to the Workwell type approach.
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Having been through about 10 relapses and partial remissions in my life, I can say that (similar to what Workwell describes) during remissions I can carefully slowly increase aerobic exercise capacity and even build some muscle. This is definitely not true during relapses, when even mild aerobic activity will leave me housebound or bedbound for days.

It's as if my aerobic system is completely broken during relapses, then stutters into some kind of fluctuating semi-functional state during remissions. What triggers a remission is a mystery to me, but I clearly started one about 2 months ago (after a 4 year relapse).
 
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NelliePledge said:
Those are the standard links from CFS/ME services. I’ve pointed elsewhere that sales of the Burgess/Chalder book are probably pretty much driven by them being referenced in the “workbook” you get given on the group programmes run by these clinics and resulting staff/patient purchases.
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interesting, because on the main NHS choices site the ME Association link is given (no mention of AfME as I can see or BACME etc) and yet the reverse is the case at the 'specialist' clinics.
 
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