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

@Action for M.E. I have some more questions and requests:

1.
Trish said:
2. Please can we see a copy of the SEE ME project report with detailed breakdown of figures of how many participants achieved what end points over what time etc. Were objective criteria for success set in advance,... So many questions...
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Action for M.E. said:
2. I will ask if this is possible and come back to you by the end of next week.
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Action for M.E. said:
I'm not able to share any project reports with you, as they were compiled for internal use only.
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@Action for M.E. do you have an idea how insulting I find this decision by your organisation?

AfME is a charity whose whole reason for existence is the fact that hundreds of thousands of people in the UK have this horrible illness and your entire focus is, I would assume, finding ways to make our lives more bearable. That must surely include opening up all aspects of your work to the scrutiny of the people you were set up to serve.

Otherwise we must assume you are serving some other master.

I ask you now formally to take this decision back to whichever part of your organisation made it and ask again. Please can we see the SEE ME documents?

If not, please could you tell us at what level this decision was made, and for what reasons it cannot be overturned. If it is on the basis of individual client confidentiality, please could it be made available with individual client identifying details redacted?
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2.
On a not unrelated question, can we have a response to this?

NelliePledge said:
@Action for M.E. i may have missed it but I think this request for copies of the Hazel O Dowd and other GP videos hasn’t been addressed yet
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Again, the question is, if not, why not? What masters are you serving in keeping secret from pwME material that advises about our treatment? What do you have to hide?
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3. I asked you by e-mail whether it would be possible for some of us to read and comment on the draft of the replacement/updated Toolkit document before you publish it. Has there been a decision on this?
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4. I have started a new thread here to discuss the other AfME work related documents. I have included there a request to you for links to the most up to date versions of these documents.

I find the AfME website almost impossible to navigate. I was unable to find links to either on your website and don't know whether the links I have are up to date.
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Thank you.
 
Trish said:
On a not unrelated question, can we have a response to this?
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And, for the fourth time of asking, 'liked' by 29 people now, can I please have a response to this:
https://www.s4me.info/threads/open-...kit-for-professionals.7629/page-8#post-143863

Sasha said:
But if David is describing this correctly and the document has already gone out to DWP then it would not enough for AfME to just withdraw the document from its portfolio and replace it - AfME would have to contact DWP and explain that the previous advice was wrong. That would be the only possible way to protect patients.

To do otherwise would be to save AfME's face at the expense of patients and that's the opposite of what an ME charity is for.

Do you accept that David's description is correct, @Action for M.E.?
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You posted this:
Action for M.E. said:
@dave30th said, in post #73: "But the document itself seems to make assumptions that many or most patients need positive support to "encourage" them to keep working and "build up their baseline"-- in fact, the notion and possibility of "building up their baseline" is repeated throughout."

If the toolkit does make this assumption impression - that most patients need positive support to encourage them to keep working - then it's wrong, and I'm sorry about that. That's why we're updating it. We will make it clear that many people with M.E. are too ill to work, that no amount of employment support will change this, and that these people should not be in the Work-Related Support Group for ESA.
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And I replied this:
So you don't say whether you accept that David's description is correct, and I can't see from your response that you accept that, if it is correct, AfME would have to contact DWP and explain that the previous advice was wrong.

So could you please tell me:

(1) Do you accept that David's description is correct?

(2) If you do, will AfME contact DWP and explain that the previous advice was wrong, in order to protect patients?
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So this time, I'd like a response that actually answers my questions.

Seriously, what is the point of an ME charity that damages the lives of ME patients? If AfME's governance is so poor that it's churning out patient-harming advice even now, even after everything we've been through with PACE, then AfME should shut itself down.
 
I wonder if, given the right support and encouragement, AfME might be able to increase their engagement here beyond their current baseline of an occasional hour per week? Nothing too dramatic of course, perhaps a gradual increase of 10% per week until they are back to work?
 
@Trish, may I ask did Action for ME ever revise their toolkit as they said they would last January after temporarily taking it down? When I went on their website today, there is no further information after their update last January saying they would take it down temporarily. It still seems not available with no revisions. Many thanks.
 
From their website it looks as though a couple of the toolkits, not the one for professionals, have been updated.

Does anyone know how different they are/any better?

Just getting background for Tues, but I suspect that a general Q re employment/studying rates will be more appropriate for Q and A, and that specific queries can be asked of individuals/followed up by email.

Website seems to be down currently...
 
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I did have a quick glance at the one for patients and the one for employers a week or so ago. To be honest I can't remember what was in the originals.

One thing I spotted was that they still describe pacing as finding a baseline and then adding 10% at a time, which is not pacing. I should have kept copies of the originals for comparison.

If you want a specific question to ask, you could ask why they describe pacing in all their materials in this way.
 
The two booklets ie Employer and Employee are very similar initially.

P4, "What is ME?" incudes the following statements:

"Around a quarter of people with M.E. are severely affected, leaving them house- and/or bed-bound for long periods. Those experiencing this level of symptom severity are unable to work."

"This booklet is for anyone employing or managing someone with mild to moderate M.E. and outlines the employment rights and support available for people with M.E..."

So I guess I will be asking whether they think that the majority of people who consider themselves "moderate" will be able to be in some paid employment?

Both these leaflets have "Copyright 2016" at the end, so may not have been substantially altered
 
(BTW just tried to search on Action for ME under member and they don't come up ? ditto trying to tag them @Adrian )
But what this post is about:

In this thread from August 2018
https://www.s4me.info/threads/actio...l-treatments-for-m-e-position-statement.5532/

AfME, following their 'statement about PACE', said they would be updating their information leaflets.
they also said they would be deleting the original 'me and work' one, superceded by the 2016 version which is still bad..........and the old one is still available online https://www.actionforme.org.uk/uploads/me-and-work.pdf

what, if anything, have AfME changed to reflect this supposed change of stance re the PACE trial and all it stands for?

@phil_in_bristol
 
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