Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

I think, when you work for an organisation (any organisation) and people are critical of it, then it can feel like a personal attack, even if that wasn't the intention? Especially when you are working hard, in the face of limitations, to right past wrongs. The way that many of the ME charities have enabled harm in the past is awful, and i guess for many this is a safe space to express how much that has hurt us. But it's also horrible if people who are trying their best feel hurt too, i hate that as well, and i hate that you feel that way. All that to say that I don't know what the answer is? Except thank you for trying to make AfME better, both Phil and those on s4me holding them to account, and i hope it will make a difference. Kx
 
The impact of our work so far
In July 2015 we sponsored Webinars for GPs to run a pilot webinar on M.E., led by
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester,
Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
extended by an hour to accommodate the many questions they asked.
All those who shared feedback rated the webinar as good, very good or excellent.
As a result of the training they received, GPs said they would be:
• more aware of M.E. and how to support patients better
• more proactive in management of symptoms
• more comprehensive when carrying out examinations and tests
• more confident in diagnosis and referral.
Click to expand...
https://www.actionforme.org.uk/uploads/2016-2021-strategy-revised-aug-2018.pdf

eta: sorry if this is tiresome
 
Last edited:
I write this as a relative newcomer, a carer and concerned parent, who currently exists in a parallel universe.

I have been part of the AfME Educate ME project, which, I hope will have worthwhile outcomes.

I found the AfME staff to be genuinely concerned and empathetic and who wanted to make things better for pwME. The info pack produced , and feedback from pilot sessions has been positive. Parents helped to devise and had sign off on the session content however have not participated in any sessions - I have had feedback from teachers whom I know.

The weirdest thing was however, that staff appeared to know virtually nothing about ME. Parents, and those on the Mentor project had to explain what PEM was, what issues were.
This strikes me as concerning.

In some ways this was positive, as they were open to, and engaged with discussions re what issues were- there was no preconceived idea of the illness. However as salaried members of a national.organisation it seems as though there is an induction process missing.

Timescales for approval/ sign off and for website changes are long - whether this is due to sign off process / part time staff / overall website change protocols , I don't know. My brother in law is in internet advertising and web campaigns and works to incredibly tight timescales.

Changes have been now been made and these are positive. There is still a bit to go. There are still major issues with the impression from the website - I would still not be aware how devastating this condition can be, and how low recovery rates are. It is still very woolly with far too many stock images that give the wrong impression.

Had I known what I now know, I would have approached things differently. Information needs to be succinct and realistic. Our problems are that we need accurate info to provide for others- accurate info is enerally severely lacking.

I have concerns, at at times despair that charities are not co- ordinated and there is so much bad blood. Do other illnesses have this problem?

I can, having looked at history, understand why , but we have to find a way to move forward. This illness is too misunderstood and too underfunded to secure significant enough progress if charities are at odds with each other - we need to find common ground.

The game changer in the past few years has IMO been ME Action , it is, in technology relative terms , a " disruptor" and is far less concerned re " playing the game" - a traditional stance that , to me, reflects the lack of progress re awareness and change. We need to channel this and build wider consensus , but this needs to be based on facts.

I have raised queries/ concerns re AfME GP Webinar and 2 year recovery period for a significant time and no response/ changes have been made. No feedback either via this forum or staff. This creates real problems for families, as FII can and does follow a failure to recover within anticipated timescales. That the information is incorrect and has been allowed to stand also has serious legal implications which where we have a social healthcare system seem to be underappreciated but exist nonetheless.

Knowing other parents with direct experience of both Mary Jane Willows and Esther Crawley , ( and that relationship raises too many questions re SMILE, FITNET and other research for comfort) , I would remain cautious re children's services. No doubt there are positive supportive stories, I have heard otherwise from some others , so the jury is out.

The statement on PACE and previous historical stance was welcomed, however it was legally caveated language - many people WILL definitely have been harmed from advice given, and will continue to be so if the info on GP webinar etc is allowed to stand without warning pending change.

To state/ believe that around 6% of people benefit from GET is a dangerous stance given that from BACME feedback there is no standardised GET - it is a free for all which can therefore have no valid conclusions drawn - I would invite @PhysiosforME to comment to this from their recent twitter survey.
That apart, 6% efficacy for a drug - would that constitute a license and general use?

Tailored anaerobic exercise a la Workwell may gave a valuable role to play - we are miles away from this.

The misdiagnosis rate is acknowledged as ridiculously high via a number of studies and to me this is the nub of a lot of problems- too little pertains to ME, and too much to " fatigue" . There is no doubt that AfME in the past have bought into this , hopefully the indications from the past couple of years are that this is changing.

I hope that @phil_in_bristol , and Clare continue to engage. We need to support change, and it needs to be from a firm fact based basis. We can all be a part of that.
 
Amw66 said:
I have been part of the AfME Educate ME project, which, I hope will have worthwhile outcomes.

I found the AfME staff to be genuinely concerned and empathetic and who wanted to make things better for pwME. The info pack produced , and feedback from pilot sessions has been positive. Parents helped to devise and had sign off on the session content however have not participated in any sessions - I have had feedback from teachers whom I know.

The weirdest thing was however, that staff appeared to know virtually nothing about ME. Parents, and those on the Mentor project had to explain what PEM was, what issues were.
This strikes me as concerning.
Click to expand...
My bolding.

That sounds bizarre, @Amw66. Can you clarify, were these AfME staff who were provided to do low level office work, like typing up information, or were they part of the more senior staff running the project? If the latter, that is deeply concerning. And may go some way to explaining why some of the materials on the AfME website are so bad. (see my new thread on their page on GET.)

My experience of contacting AfME earlier this year to point out problems with the Toolkit document discussed on this thread was that there seemed to be no understanding even among senior staff of how science works, and what scientific evidence is. If they don't even understand what ME is either, that is off-the-wall shocking.
 
Trish said:
My bolding.

That sounds bizarre, @Amw66. Can you clarify, were these AfME staff who were provided to do low level office work, like typing up information, or were they part of the more senior staff running the project? If the latter, that is deeply concerning. And may go some way to explaining why some of the materials on the AfME website are so bad. (see my new thread on their page on GET.)

My experience of contacting AfME earlier this year to point out problems with the Toolkit document discussed on this thread was that there seemed to be no understanding even among senior staff of how science works, and what scientific evidence is. If they don't even understand what ME is either, that is off-the-wall shocking.
Click to expand...
Will PM you
 
Moderator note:
A member has decided to delete several of their recent posts in this thread. This means some other posts responding to the deleted posts may seem out of place.

We do not intend to edit the responses, but, if you would prefer to delete or edit your own post, you are of course free to do so. If you do, we'd appreciate it if you let a moderator know so we can deal with any knock on effects, e.g. if people quoted your post.
 
Last edited:
Well that's disheartening. Yes, AfME have changed. The past is the past.

I didn't find any of the current criticisms of AfME here on this thread to be mean spirited. On the other hand I think the criticisms weren't beating around the bush either.

AfME is a charity; with a mission. Either they fulfill that mission or the people whom it affects should be able to provide feedback.

It seems that only glowing reports are welcome.

And it was inaccurate to say that here at S4ME we only reserve criticism for AfME. Far from it.

And from a personal POV: AfME have changed. But (and there is no answer to this) I do wonder to what degree that would be true if it were not for the bravery of others coming forward and shaking things up in the British establishment. Again, my POV, AfME are not at all brave. They stick their head above the parapet only when they see that it is safe to do so. If things were same old, same old and others had not pressed I think we'd see AfME as cosy with the established view still. Possibly.

Since I'm no insider I may be wrong about this but that is how it seems to me. Others blazed the path that was AfME's (and other UK charities) to trod.

It is certainly no fault of those that came recently to the fray and have a firm grasp of what is needed. However, trust has been broken. I don't think it's at all realistic to expect that people who have been assaulted by their own charities complicity with the BSP cabal in the past to become cheerleaders only seeing the happy good bits. It's not natural.

As well as all the factual points about all this there needs to be time to heal. AfME are going to have to suck it up (again in my opinion). I call it consequences.
 
Amw66 said:
I write this as a relative newcomer, a carer and concerned parent, who currently exists in a parallel universe.

I have been part of the AfME Educate ME project, which, I hope will have worthwhile outcomes.

I found the AfME staff to be genuinely concerned and empathetic and who wanted to make things better for pwME. The info pack produced , and feedback from pilot sessions has been positive. Parents helped to devise and had sign off on the session content however have not participated in any sessions - I have had feedback from teachers whom I know.

The weirdest thing was however, that staff appeared to know virtually nothing about ME. Parents, and those on the Mentor project had to explain what PEM was, what issues were.
This strikes me as concerning.

In some ways this was positive, as they were open to, and engaged with discussions re what issues were- there was no preconceived idea of the illness. However as salaried members of a national.organisation it seems as though there is an induction process missing.

Timescales for approval/ sign off and for website changes are long - whether this is due to sign off process / part time staff / overall website change protocols , I don't know. My brother in law is in internet advertising and web campaigns and works to incredibly tight timescales.

Changes have been now been made and these are positive. There is still a bit to go. There are still major issues with the impression from the website - I would still not be aware how devastating this condition can be, and how low recovery rates are. It is still very woolly with far too many stock images that give the wrong impression.

Had I known what I now know, I would have approached things differently. Information needs to be succinct and realistic. Our problems are that we need accurate info to provide for others- accurate info is enerally severely lacking.

I have concerns, at at times despair that charities are not co- ordinated and there is so much bad blood. Do other illnesses have this problem?

I can, having looked at history, understand why , but we have to find a way to move forward. This illness is too misunderstood and too underfunded to secure significant enough progress if charities are at odds with each other - we need to find common ground.

The game changer in the past few years has IMO been ME Action , it is, in technology relative terms , a " disruptor" and is far less concerned re " playing the game" - a traditional stance that , to me, reflects the lack of progress re awareness and change. We need to channel this and build wider consensus , but this needs to be based on facts.

I have raised queries/ concerns re AfME GP Webinar and 2 year recovery period for a significant time and no response/ changes have been made. No feedback either via this forum or staff. This creates real problems for families, as FII can and does follow a failure to recover within anticipated timescales. That the information is incorrect and has been allowed to stand also has serious legal implications which where we have a social healthcare system seem to be underappreciated but exist nonetheless.

Knowing other parents with direct experience of both Mary Jane Willows and Esther Crawley , ( and that relationship raises too many questions re SMILE, FITNET and other research for comfort) , I would remain cautious re children's services. No doubt there are positive supportive stories, I have heard otherwise from some others , so the jury is out.

The statement on PACE and previous historical stance was welcomed, however it was legally caveated language - many people WILL definitely have been harmed from advice given, and will continue to be so if the info on GP webinar etc is allowed to stand without warning pending change.

To state/ believe that around 6% of people benefit from GET is a dangerous stance given that from BACME feedback there is no standardised GET - it is a free for all which can therefore have no valid conclusions drawn - I would invite @PhysiosforME to comment to this from their recent twitter survey.
That apart, 6% efficacy for a drug - would that constitute a license and general use?

Tailored anaerobic exercise a la Workwell may gave a valuable role to play - we are miles away from this.

The misdiagnosis rate is acknowledged as ridiculously high via a number of studies and to me this is the nub of a lot of problems- too little pertains to ME, and too much to " fatigue" . There is no doubt that AfME in the past have bought into this , hopefully the indications from the past couple of years are that this is changing.

I hope that @phil_in_bristol , and Clare continue to engage. We need to support change, and it needs to be from a firm fact based basis. We can all be a part of that.
Click to expand...

Our survey looked at physiotherapy in general so we can't really comment on GET based on the responses I am afraid.
 
You must log in or register to reply here.
Back
Top Bottom