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 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

 

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 - I would like your last post more than once if I could

 

Brava !

 

The "boom-bust" stuff is total nonsense and not based on any evidence of activity patterns in patients.

Certain people like to equate PEM with doing too much, hence boom-bust.

 

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.

 

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.

 

And I think that this fits in with Action for ME's seemingly thoughtless attitude of 'lets be positive and do something!'

 

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).

 

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.