UK Action for ME - policies, actions and publications - discussion thread

[Invisible Woman]

Is there scope for patients here helping to revise the problematic documents? At a time when a huge wave of new Long Covid patients might be looking to AfME for guidance, now is not the time to have a load of misleading and dangerous rubbish up on the site about CBT and GET.

As @Trish said, efforts were made. If they're moving in the right direction I'd happily support them in that wherever I could rather than throw tomatoes from the side lines.

The trouble with it is this - Sonya gives a good talk. She says all the right things and comes across to me as sensible, pragmatic and reasonable. However, some of the bad documentation is all the worse for being not immediately, obviously terrible. Unless you know what you're looking for.

An innocent newbie could be forgiven for handing something over to employer, colleagues or family having just heard Sonya speak and assuming it's all ok. Perhaps they've skim read it because they haven't the resource to read every little thing and are still trusting.

Then employer, friend or family read it and think, "well, if this is what the main charity recommend....." and before you know it the pwME or LC are being asked to " pace up".

However, they have changed both personnel and views significantly over the last few years.

They have changed personnel, I am unconvinced about the view change. They haven't changed the stuff that matters, the information they give out that should be supporting patients, not causing more grief. If their views had shifted they would be quicker and more proactive in prevention of further harm and stigma to pwME.

I don't disagree with keeping lines of communication open but I would want to remain very careful that no claims could be made about us endorsing them.

It's easy as someone who has been sick a long time and knows the ropes to forget how devastating it is when we become victims of "friendly fire" - when someone we assume is supportive makes our lives a lot worse. AfME continue to do that with their documentation.

If I wasn't on this forum and aware of DecodeME through it, then AfME's involvement in spreading the word would have made me extremely sceptical about signing up to it. I'm not saying that's a majority view but I'm pretty sure I wouldn't be alone in that.

Edit- spelling

 

[CRG]

I agree we have to accept that they won't just bend to our will, as they are a separate organisation and have their own people and policies. However, they have changed both personnel and views significantly over the last few years. I think it's still worth keeping communication lines open and expressing well reasoned views to them if we disagree on specific actions or products.

Absolutely this.

There's much discussion here https://www.s4me.info/threads/blog-beyond-the-nice-guideline-mecomms©-and-the-case-for-a-public-inquiry.21332/ that is based around the need for UK organisations to co-operate; there is no chance of co-operation if organisations and the patients that support them cannot respect the particular positions and perspectives that each organisation holds.

For transparency, I've been an MEA member for 30+ years.

 

[Dolphin]

I think we just have to accept that AfME has always held views and values which differ from ours. Their predecessor organisation used to write nonsense in 1988 or whenever it was, and nothing has changed Presumably there "members" expect no more.

AfME at that stage was more radical than the ME Association who were seen as slow to act (hence ME Action and then Action for ME). Action for ME were also more into alternative and complementary therapies and approaches. And were very critical of CBT and GET. Action for ME changed to become more mainstream and less radical than the ME Association. Also for a lot of the 2000s and 2010s was perhaps a bit less interested in alternative and complementary approaches while Dr Shepherd started to not be as critical of them and sometimes recommend them.

So I find it difficult in seeing Action for ME as having specific views and values over the course of the last 30 years.

 

[Invisible Woman]

there is no chance of co-operation if organisations and the patients that support them cannot respect the particular positions and perspectives that each organisation holds.

I cannot respect an organisation that states one thing and then says something else in documents that harm patients.

If AfME were to put their house in order then I would be supportive.

It's a charity I don't expect perfectly aligned views on everything but failing to correct advice that is harmful to patients is not optional. That's basic stuff.

Edit - for sake of balance MEA aren't always entirely blameless for lack of clarity when it comes to discussing exercise and activity. I just don't think they're as bad.

 

[CRG]

I cannot respect an organisation that states one thing and then says something else in documents that harm patients.

AfME has four PwME on a ten member Board of Trustees.

It is very simple rule, if we want people to respect us, we have to respect them and if PwME want the various organisations that represent us to work together, then co-operation is only going to happen where there is mutual respect. That doesn't mean no difference, it just means acknowledging the differences and seeking to work toward common goals.

 

[Invisible Woman]

It is very simple rule, if we want people to respect us, we have to respect them and if PwME want the various organisations that represent us to work together, then co-operation is only going to happen where there is mutual respect. That doesn't mean no difference, it just means acknowledging the differences and seeking to work toward common goals.

An organisation who promotes pacing up in the way AfME have are actively causing harm either through patients pushing themselves when they shouldn't, or by forcing them into confrontation they don't need with employers, health care professionals and families when trying to manage their condition as best they can.

 

[Ariel]

I cannot respect an organisation that states one thing and then says something else in documents that harm patients.

If AfME were to put their house in order then I would be supportive.

If documents harm patients they should be withdrawn. If organisations fail to do that they are part of the problem. I am in agreement with this quote; where is the value in trying to pretend that the nature of this illness is different than what it really is? Does more harm and no good; I would be perfectly happy if such organisations were not around, particularly as "pacing up" materials can just be used against us (ME patients) and (now) long covid patients to misrepresent our illness.

It is time to face the reality of what this illness is. There is no "middle ground" of pretending things are not what they are to placate forces who would keep us doing harmful "treatments" with no help or recognition.

One of the more helpful things that organizations could do is help educate the public on what this illness is, to decrease the burden on ME patients of lack of understanding/not being believed. How can they with misleading materials and "pacing up" style approaches?

Whole thing smacks of "we're not like those nasty, unreasonable people over there" or "not like the other girls".

 

[Andy]

Is there scope for patients here helping to revise the problematic documents? At a time when a huge wave of new Long Covid patients might be looking to AfME for guidance, now is not the time to have a load of misleading and dangerous rubbish up on the site about CBT and GET.

In my opinion, the best way forward on this subject would be if those documents seen as problematic were reviewed, desired edits were listed with reasons for them, and then a dialogue with AfME opened in order to see if they are open to those changes being made.

I have no idea if AfME would be open to dialogue in this way, but in my opinion doing things in this way would stand more chance of bringing change than continuing in the same way that has been proven not to work.

ETA: change "bring" to "bringing".

 

[Ariel]

...without expressing to AfME what exactly is wrong with their documents and why. In my opinion, the best way forward on this subject would be if those documents seen as problematic were reviewed, desired edits were listed with reasons for them, and then a dialogue with AfME opened in order to see if they are open to those changes being made.

This sounds like a great way forward (time and energy permitting); in relation to these documents mentioned, I had wondered whether anyone at AfME is actually aware of these concerns/criticisms as I am unaware of who drafted materials, etc, and for what purpose (are they patients?). This is a difficult thing to get right especially if one does not know a lot about living with this illness and the relevant background. So I can imagine people not knowing how to make "corrections" even if they wanted to in the absence of deeper context and a straightforward list of suggestions for edits.

Certainly working together on shared goals is the only way forward, and I would have thought in theory that any AfME documents should be subject to review after the NICE guidelines are published, which represents an opportunity to refresh matters and get things if not exactly right then at least much better.

 

[Trish]

In my opinion, the best way forward on this subject would be if those documents seen as problematic were reviewed, desired edits were listed with reasons for them, and then a dialogue with AfME opened in order to see if they are open to those changes being made.

I agree, but I also think there is a place for people expressing their response to the current situation too. I would not have been so aware of the need for change at AfME without some very critical discussion here first. Sometimes it takes a while for general dismay at ongoing problems to coalesce into positive action. It can be an uncomfortable process, but not necessarily a destructive one if it leads to positive action and outcomes.

As described earlier in this discussion, some of us have taken constructive action on AfME documents a couple of years ago, to some good effect. I think it's an ongoing process and depends on individuals having the time and energy to make such detailed suggestions about specific documents to AfME. I personally don't have the energy to do any more of this at present. I hope someone else will do so.

 

[Sly Saint]

"Read though AFME's updated booklet on pacing. As an expert on this, I can inform readers that this is APT, not pacing. It's tone is Daily Express, and there's no real science except for ref re 'fatigue'. APT was less helpful than CBT and GET in PACE trial. We can do better."

https://www.s4me.info/threads/pacin...updated-january-2020.13320/page-7#post-240931

 

[TiredSam]

there is no chance of co-operation if organisations and the patients that support them cannot respect the particular positions and perspectives that each organisation holds.

Those who have valid concerns about AfME should be able to express them. AfME have an absolutely appalling history, and still have a way to go on some fronts. The fact that they have made some progress and we can now co-operate with them on some matters does not mean that concerns should no longer be expressed on others, especially when there are still substantive matters outstanding. Part of a mature relationship based on respect is being able to express concerns and disagreement.

 

[Andy]

I agree, but I also think there is a place for people expressing their response to the current situation too. I would not have been so aware of the need for change at AfME without some very critical discussion here first. Sometimes it takes a while for general dismay at ongoing problems to coalesce into positive action. It can be an uncomfortable process, but not necessarily a destructive one if it leads to positive action and outcomes.

As described earlier in this discussion, some of us have taken constructive action on AfME documents a couple of years ago, to some good effect. I think it's an ongoing process and depends on individuals having the time and energy to make such detailed suggestions about specific documents to AfME. I personally don't have the energy to do any more of this at present. I hope someone else will do so.

I merely suggested a way forward that I thought would actually produce results as, to my knowledge, other than your efforts on specific documents I don't know of anybody else who has tried to clearly explain the what and why of any issues with their documents. I understand why but we've had 'general dismay' for years, it's time for a different approach if people actually want results.

 

[CRG]

Those who have valid concerns about AfME should be able to express them. AfME have an absolutely appalling history, and still have a way to go on some fronts. The fact that they have made some progress and we can now co-operate with them on some matters does not mean that concerns should no longer be expressed on others, especially when there are still substantive matters outstanding. Part of a mature relationship based on respect is being able to express concerns and disagreement.

Respecting a point of view doesn't mean unconditionally agreeing with it. The best arguments are between people who hold diverging views but who respect both the other person and the fact that their view is sincerely held. Of course some views are toxic and those who hold them command no respect and there can be no co-operation with such people.

But if we accept that all ME/CFS patients are equally entitled to view ME/CFS each in their own terms then that must be basis for mutual respect, no matter how much we differ in those views. If one starts from a position that patient/patient organisation X is 'wrong' and can only be accorded respect once they have purged their 'wrongness' there exists not only an absence of any possibility of co-operation but the fact that the antagonism that X is likely to perceive in being damned as 'wrong' serves only to confirm to X that they are in fact right.

At some point if people/organisations are to work together there has to be forgiveness of past sins, you simply say "what's our commonalities ? what are we going to work to achieve ? the past is done, now we are only interested in going forward".

 

[Sasha]

In my opinion, the best way forward on this subject would be if those documents seen as problematic were reviewed, desired edits were listed with reasons for them, and then a dialogue with AfME opened in order to see if they are open to those changes being made.

I have no idea if AfME would be open to dialogue in this way, but in my opinion doing things in this way would stand more chance of bringing change than continuing in the same way that has been proven not to work.

That sounds like a productive way forward.

Would anyone like to get the ball rolling by providing links to the offending documents?

 

[Sly Saint]

The Charity considers its key personnel to comprise the Trustees and the Chief Executive Officer. The total employment benefits
including employer pension contributions of the key personnel were £97,332

The Trustees all give freely their time and expertise without any form of remuneration
or other benefit in cash or kind.

–
Total expenses reimbursed to Trustees or met by the charity. These expenses were
made up of five Trustees for travel and accommodation for the purpose of attending
Board meetings. 3,275

Amounts of expenses incurred by Trustees that were donated back to the charity. 406

https://register-of-charities.chari...lsPortlet_priv_r_p_organisationNumber=1036419

 

[TiredSam]

Of course some views are toxic and those who hold them command no respect and there can be no co-operation with such people.

That was AfME in the past, and they were unresponsive to any attempts at dialogue.

But if we accept that all ME/CFS patients are equally entitled to view ME/CFS each in their own terms

I don't. Whilst there is a lot of scope for people to take their own approach, some things are still true or not true, right or wrong. Some things are abusive and harmful, and the fact that some organisations or individual PWME support them doesn't make them any less so. I won't list the harmful and wrong approaches AfME and their medical advisors have promoted in the past.

At some point if people/organisations are to work together there has to be forgiveness of past sins

I can support those who are working with AfME and admire their skills in doing so without having my memory wiped or considering them beyond all criticism now. AfME have not asked for forgiveness, and some of their sins are still present. I have not criticized AfME publicly for a very long time now for the practical reason of giving current efforts a chance.

If one starts from a position that patient/patient organisation X is 'wrong' and can only be accorded respect once they have purged their 'wrongness' there exists not only an absence of any possibility of co-operation

Events have proved that statement wrong, AfME was viewed as wrong, and we are now cooperating with them. The two are not mutually exclusive. What happened there?

 

[Invisible Woman]

I agree the past is in the past and, as long as it doesn't cause problems in the present we should move on.

When Simon Wessely tells us to "move on there's nothing to see here", or some other BPS person says "oh, we don't do that anymore" we don't agree to let bygones be bygones because patients are still being harmed.

It doesn't matter who gives the harmful advice - it's the advice that's the problem whether that advice is from a BPS clinic or an ME charity's documents.

As I understood it there was some dialogue with AfME here. I think it was Clare Ogden who became the person representing the charity on here.

We discussed some of the documents. Some changes were made and when further suggestions were made about other booklets/info leaflets they were very busy, it would take a long time and then they seemed to disappear.

That was a shame as it looked like it might be a positive way forward.

I would like to point out that at no time did I say we shouldn't ever work with AfME nor that we shouldn't have open lines of communication. Just that some of their work is problematic and needs to be addressed. Otherwise it will continue to cause harm.

If AfME chose to address it before at a time of their own choosing then they would be in control. It wouldn't return to bite them in the rear at inconvenient moments as this has done.

 

[Trish]

Moderator note:
Following review by moderators and several amendments to posts, this thread is now reopened. Thank you for your patience.
Please be mindful of Rule 1:

Rule 1: No personal attacks or public accusations
While vigorous discourse and even disagreement is to be expected on a forum, it is not appropriate to insult other forum members or attack them on the basis of their characteristics or motivations. Public accusations against other forum members are also not permitted, as they distract from the discussion and can escalate a situation. Disagreement should focus upon the arguments made, not upon the person making those arguments.

 

[Kitty]

In my opinion, the best way forward on this subject would be if those documents seen as problematic were reviewed, desired edits were listed with reasons for them, and then a dialogue with AfME opened in order to see if they are open to those changes being made.

I have no idea if AfME would be open to dialogue in this way, but in my opinion doing things in this way would stand more chance of bringing change than continuing in the same way that has been proven not to work.

Perhaps once the new NICE guidelines are issued, that could be used as the prompt for a review? (Provided the guidelines haven't been changed drastically, of course.)

Where there is general agreement between patients, doctors and researchers that a guideline is as sound as it can be, given the current state of knowledge, there's arguably no reason for a charity not to include the same advice in its own publications. There might be differences in tone or emphasis, and these can be genuinely problematic, but if the guidelines get the basics right, the potential for harm is reduced enormously. All the charities ought to be able to sign up to that at the very least.