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

Trish said:
@large donner I think your anger is completely understandable and many of us share it, even if we don't express it so forcefully.
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I was actually very calm when I posted that @Trish, just being completely pragmatic. Its like we are standing infront of the keystone kops pointing at people dressed in blue and white striped T shirts with a bag on their shoulders marked "swag" slipping on strawberry jelly and they just keep stealing peoples jewellery right in front of them then saying oops we are sorry.
 
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Action CIND said:
Please don’t blame IAFME because of the actions of one party. We are committed to making a difference. Getting the WHO on board would be a great accomplishment.
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I don't think anyone is blaming the other members of IAFME for the actions of its founder member.

I think what some of us have been puzzled by is the idea that other ME organisations chose to join a new organisation set up by AfME when it is clear for all to see by examining the materials on their website that they currently produce materials potentially harmful to pwME.

You have made it clear to us today just how unaware you were of AfME's serious flaws by pointing out that it took someone attending your webinar to point out the concerns raised here and by David Tuller about the Toolkit.

I applaud your action in joining us in asking AfME to remove the toolkit. I hope we can continue to work together to help AfME to change its materials and advice for doctors, other professionals and patients to reflect current scientific evidence.
 
Trish said:
@Action for M.E. Thank you for coming here today to answer more questions. I appreciate it.


If that is the case, none of your project reports have been peer reviewed or published, so none of them should be used as evidence for ongoing action that involves strategies for helping or giving advice to patients or that affects patients' lives.
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That is absolutely true. I think @Action for M.E., a core concern is that highly influential actions are being taken based on "evidence" that simply ... isn't. It is a fundamental tenet that actions affecting people's health and well-being (real people one and all) simply have to be underpinned by good quality evidence, else there are very very serious culpability issues in play. True appreciation of what constitutes good evidence, and how to go about getting it, is what seems to be amiss. It is what S4ME advocates so strongly for, because pretty much everything that has gone so badly wrong for pwME comes back to this. I'm sure there are many resources that can help in this regard, and many very knowledgeable people here on S4ME who may be able to help directly, or point you in the right direction (not volunteering myself, because I lack the necessary expertise and qualifications). It is good to be talking, and of course it has to be honest. Thank you for engaging here, that is genuinely appreciated.
 
Trish said:
@Action for M.E. Thank you for coming here today to answer more questions. I appreciate it.


If that is the case, none of your project reports have been peer reviewed or published, so none of them should be used as evidence for ongoing action that
involves strategies for helping or giving advice to patients or that affects patients' lives.
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Thank you @Trish for your replies in this thread, and for this excellent point about lack of peer review. If I understand correctly, AfME is saying they did a study - it worked, they won't make the data/results public - trust them it works, and the DWP is implementing a toolkit based on this study, or studies. Am I correct in my understanding?

I am not directing the following questions at you for answers.

My general impression and questions regarding the development of a toolkit for the DWP for ME:

Why would an agency (AfME) expend a lot of time and money developing a get back to work manual for such severely ill people in the first place? Of course, pwME need help, we are not a waste of time and money. However, a get back to work manual presumes people have EFFECTIVE medical treatment and support, and are physically, and cognitively ready to work. A giant step has been missed here. This whole idea looks like work as therapy. Work will cure you.

What we do need is biomedical research and medical education. It looks like this toolkit follows the same approach for work rehab with any disease. However, many diseases have pharmaceutical treatment of some kind - some form of safety net; something that improves symptoms and quality of life. PwME do not have this, and yet there seems to be the expectation that a graded return to work is possible without any REAL and effective medical assistance. Being jollied, coaxed or CBT'd along doesn't keep pwME in the work force, nor make them well. This is not a psychological condition.

Only about 25 percent can work. Symptoms fluctuate, and may worsen; pwME can go from mild to severe. What happens to those who believed they could participate in graded work increases who find themselves too ill to continue? Are they believed, or are they encouraged to continue working?

Are biomedical ME experts assessing pwME for this return to work? What are the qualifications of those who do the medical assessment? If biomedical experts are approving pwME for return to work, are they providing effective pharmaceutical treatments for these people?

What are the qualifications of the DWP assessors? Other governments have moved to dumb down qualification requirements for government workers - even in departments where workers' decisions may have a profound effect on people's lives.

If AfME is the entire funding source for the IAFME, won't it have more influence than non-funding participants? One would logically think so.
 
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I too commend @Action for M.E. 's participation here, and their taking off line the Tool Kit pending a rewrite taking into account @Trish 's valuable letter and issues raised by others.

Today I am struggling to get my head arround the issues under discussion, but do value we are able to have what might be termed 'a full and frank discussion'. Historically ME has been plagued by woolly thinking (to indulge in understatement) and a failure by some to engage with constructive criticism. It feels to me that participation in threads like this is a step forward.
 
Unless I have missed it, a look at the AfME guide for employers does not mention an important symptom that impacts work: orthostatic intolerance (OI)
https://www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

OI is a symptom the IOM/NAM highlights as evidenced based for pwME:

http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_ProposedDiagnosticCriteria


This major symptom for pwME, left untreated as it often is for us, has a major impact on the ability to work, as well as the rest of our lives.

PwME who have OI, and the majority of us do, cannot spend hours upright everyday, and be impervious to symptoms resulting from this physiological abnormality: palpitations, lightheadedness, faintness, fainting, confusion, uncoordination/clumsiness, headache, confusion, weakness etc.

How on earth can people with untreated, or unsuccessfully treated OI function at work? We are unsuccessful coping with this at home.

Picture an employer's surprise when they find that they have to deal with an employee whose OI interfere's with carrying out duties to such an extent, the employee faints on the job, is frequently confused due to lack of cerebral blood flow, can't even sit up at their computer or stand behind a counter, is too weak or uncoordinated to accomplish simple tasks, or heaven forbid, falls into dangerous moving machinery.

How does one coach this symptom away?
 
Hello Clare @Action for M.E.

Action for M.E. said:
I appreciate this feedback – thank you. I am a real person, trying to engage directly with you and your concerns. In my role I often have to use quite formal language but I understand this is not helpful here, and I'm trying to be mindful of that when I write my responses.
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I am aware of course that you are real and appreciate the difficult task you have in communicating with PwME who have a not altogether positive view of the charity and appreciate your restraint.

I do think that this:

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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is probably part of the problem. It could be that some of the useful information that would answer some of our questions lies in information that is for internal use only so some answers will come off as less satisfying.

I know that this is not something that can likely be changed.

PwME need all the allies we can find. And I'm sure there is a desire at AfME to see our situation improve. I also think FWIW that if AfME had made a simple statement of apology for it's support of the (extremely insupportable) PACE trial and taken on board the understanding of the real harm that had happened to real people that the tone might be somewhat different.
 
How many pwME have orthostatic intolerance (OI)?

MEpedia reports estimates show 50 to 97% have OI:

https://www.me-pedia.org/wiki/Orthostatic_intolerance

About half, to the vast majority of pwME have OI.

This is important for employers, medical personnel, and policy makers to know, and take on board.

If this is not documented for employers by all those dealing with this group including AfME it could potentially create problems.
 
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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How on earth does publishing a booklet and giving it to the DWP count as "internal use"? If it's for internal use only, then keep it to yourself. If you're going to disseminate information based on the reports, be ready to provide the evidence. You can't have it both ways.
 
@Trish Apologies for being a latecomer in doing so but I wanted to add my heartfelt thanks for everything you have done with regard to pointing out all the issues with this Toolkit and getting it at least temporarily removed.

I am personally hugely grateful that you have done this as I can testify to the harms caused by such things. I first became ill in 89 and remained undiagnosed for many years, but was able to continue working until early 2011 when I had a massive ME crash and was forced to give up work. At this point my GP classified me as mod/severe. At the end of Dec I had to take redundancy due to company relocation (I would have taken it with or without ME).

Once my redundancy money and our savings ran out and due to my husbands work situation, I had no choice but to apply for ESA (at some point in early 2013). Initially, much to my dismay I was put in the WRAG group and it caused me much torment. I was forced to attend pointless regular meetings that I knew I was too ill too attend let alone get any benefit from, and threatened, albeit obliquely, with sanctions if I didn't. Even though this was prior to the @Action for M.E. Toolkit the ethos was nevertheless one of work is good for you, an expectation of positive attitude, rehabilitation and goal setting. Trying to persuade the advisers that this pressure was making me worse was the devils own job. The attitudes of the advisers ranged from sympathetic jobsworths who 'understood' but felt there was nothing they could do about it, in part because of the pressures they themselves were under from their masters, to those who simply didn't care.

For 15 months I had to endure this torture until in exasperation my GP gave them a stern phone call, followed by a sternly worded letter and two weeks later I received notification that I was being moved to the support group. But by then it was too late I had already been pushed from moderate/severe into the severe category and my downward spiral continues to this day. As I say this was before the existence of this Toolkit. I dread to think what further pressures they would have placed on me had they been given the endorsement that this Toolkit appears to give them. And of course I fear for others still going through or facing that process in the WRAG.

@Action for M.E. please bear in mind that I do not feel you understand the mindset of the DWP or the policies under which they operate. Or that the Toolkit is written from the right perspective. That we ME patients want to get back to work should be a given, we do not need any encouragement whatsoever to work towards that. What we need is for DWP etc to understand our difficulties in achieving this goal and the simple fact that most of us have no chance of it whatsoever. If you must write a Toolkit please do so from the point of view of safeguarding the patient/client. And with stern warnings for the DWP of what harm they can very easily cause if the put any pressure on us at all. And of course with the intention of informing DWP that the vast majority of us should not even be in the WRAG in the first place.

Thanks again @Trish
 
This thread is inspirational. Disgraceful that it is necessary. But brilliantly done. Thank you again @Trish. So very much.

I keep sticking my head and up, saying things and then collapsing again :( I keep half writing more things for other advocacy fora here and this thread, then plopping and never sending. At least I'm in company that will understand this, for once....

IAFM - do we know if the UK ME Association are members as well?

I will eventually 'get round' to actually posting what I've been intending to about advocacy... BTW do the ME Action people also live here?
 
Maggie said:
@Trish Apologies for being a latecomer in doing so but I wanted to add my heartfelt thanks for everything you have done with regard to pointing out all the issues with this Toolkit and getting it at least temporarily removed.

I am personally hugely grateful that you have done this as I can testify to the harms caused by such things. I first became ill in 89 and remained undiagnosed for many years, but was able to continue working until early 2011 when I had a massive ME crash and was forced to give up work. At this point my GP classified me as mod/severe. At the end of Dec I had to take redundancy due to company relocation (I would have taken it with or without ME).

Once my redundancy money and our savings ran out and due to my husbands work situation, I had no choice but to apply for ESA (at some point in early 2013). Initially, much to my dismay I was put in the WRAG group and it caused me much torment. I was forced to attend pointless regular meetings that I knew I was too ill too attend let alone get any benefit from, and threatened, albeit obliquely, with sanctions if I didn't. Even though this was prior to the @Action for M.E. Toolkit the ethos was nevertheless one of work is good for you, an expectation of positive attitude, rehabilitation and goal setting. Trying to persuade the advisers that this pressure was making me worse was the devils own job. The attitudes of the advisers ranged from sympathetic jobsworths who 'understood' but felt there was nothing they could do about it, in part because of the pressures they themselves were under from their masters, to those who simply didn't care.

For 15 months I had to endure this torture until in exasperation my GP gave them a stern phone call, followed by a sternly worded letter and two weeks later I received notification that I was being moved to the support group. But by then it was too late I had already been pushed from moderate/severe into the severe category and my downward spiral continues to this day. As I say this was before the existence of this Toolkit. I dread to think what further pressures they would have placed on me had they been given the endorsement that this Toolkit appears to give them. And of course I fear for others still going through or facing that process in the WRAG.

@Action for M.E. please bear in mind that I do not feel you understand the mindset of the DWP or the policies under which they operate. Or that the Toolkit is written from the right perspective. That we ME patients want to get back to work should be a given, we do not need any encouragement whatsoever to work towards that. What we need is for DWP etc to understand our difficulties in achieving this goal and the simple fact that most of us have no chance of it whatsoever. If you must write a Toolkit please do so from the point of view of safeguarding the patient/client. And with stern warnings for the DWP of what harm they can very easily cause if the put any pressure on us at all. And of course with the intention of informing DWP that the vast majority of us should not even be in the WRAG in the first place.

Thanks again @Trish
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This.
However, though @Trish is absolutely spot on with her points, it seems to be via IAFME mechanism that initiated action. I would like to think that @dave30th ' s blogpost contributed too.

That in itself speaks volumes.
 
TiredSam said:
How on earth does publishing a booklet and giving it to the DWP count as "internal use"? If it's for internal use only, then keep it to yourself. If you're going to disseminate information based on the reports, be ready to provide the evidence. You can't have it both ways.
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It occurs to me that we have heard a very similar argument like this before - with PACE. We've been told then that we aren't the right type of people to be given the data, and here we being told exactly the same thing, yet this time by an organisation that is meant to be working for us.
 
Had to look that up. From wiki

Delegata potestas non potest delegari is a principle in constitutional and administrative law that means in Latin that "no delegated powers can be further delegated.
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Yes. Given the Employer 's Handbook and the See M.E. Toolkit (now under review) I certainly don't feel AfME represent me. I would want MEA in there in the hopes they might provide a bit of balance to some of the AfME stuff, though they're not faultless either.

Forward ME doesn't have the same function as either MEA or AfME and no direct contact through support lines with patients.
 
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