What is Action for ME's current (March 2018) position on the PACE trial?

[Invisible Woman]

I think you have described my feelings toward AfME very well @Esther12.

Until they at least acknowledge and demonstrate an understanding of the past mistakes and damage caused, then I cannot trust them.

All the pretty words in the world and dancing around the issue will not change that.

If AfME want my trust and the right to speak on my behalf they need to prove themselves worthy. Proof first then we start rebuilding trust and that acknowledgment and demonstration would be the first step in my view.

 

[Sasha]

I keep being amazed by how bad Action for ME still are, even after all the work and sacrifices other people have had to make to try to mitigate the harm you've caused.

[...] you're the patient organisation that supported PACE! You have a responsibility to be engaging competently in the debate. You've had this responsibility for over a decade, and your failure to live up to it has done terrible harm.

How can Action for ME's position be anything other than: "We realise that we made a serious mistake in trusting the PACE trial researchers. We are openly calling for the release of all information available that can help shed light on what led to this appalling scandal. We would like to apologise for the harm we caused through our misguided support for the PACE trial. We did not know what we were doing and we failed to properly investigate the concerns that patients raised with us."

There isn't a 'like' button big enough for this.

I'd rather see you shut down than carry on like this, @Action for M.E.

You're hurting patients and yet you seem absolutely blind to it. We can't understand why.

So, why?

 

[Trish]

I've been trying to understand the decision making process in AfME and found the 2016/17 Trustees report and accounts:
https://www.actionforme.org.uk/uploads/2016-2017-trustee-report-and-accounts.pdf
Of interest to this conversation I think it these statements on page 20:

The Board of Trustees of Action for M.E. meets quarterly with the Chief Executive and relevant staff to exercise corporate governance, to give strategic direction, and to manage the performance and achievement of corporate objectives.

The Policy and Communications Group meets quarterly and provides a steer for the charity’s policy, influencing and communications work.

So it seems clear to me that it is the Trustees who direct the policy, presumably including what treatments are recommended.

Trustees are recruited by advertising openly, or through targeted recruitment if there is a skill that would be beneficial to the Board and the charity that is missing. We aim to have a minimum of 51% of Trustees on our Board who have direct experience of M.E.

 

[arewenearlythereyet]

I’ve just scanned through the trustees. They do have a large proportion of trustees that claim to be affected directly or indirectly by ME although there is one or two notable exceptions. I suspect that they realise they are now in a rather awkward position and don’t know how to get out of it.

I guess we need to keep spelling out what that should be? Although I think @Esther12 has spelled this out quite clearly.

It’s always difficult admitting your wrong and have potentially harmed people by your actions ...but this isn’t KPMG or any other ruthless accounting company...it’s a charity where people’s welfare should be at its heart ...not a balance sheet where potential litigation for wrong doing sits at the top of the risk management priority list above doing the right thing by your members...who are paying members (not assets or staff)

 

[Sly Saint]

Although this is from 2012 Clare Francis (President AfME and trustee at the time) said in an interview with the Daily Mail
"
‘Luckily I was one of the 60 per cent of sufferers who recover – though are never quite the same. It took me about ten years to feel better.'

I hope that at least she has been informed that this figure is incorrect.

http://www.dailymail.co.uk/femail/a...pered-mortar-bomb--I-write-word.html#comments

 

[Sunshine3]

Although this is from 2012 Clare Francis (President AfME and trustee at the time) said in an interview with the Daily Mail
"
‘Luckily I was one of the 60 per cent of sufferers who recover – though are never quite the same. It took me about ten years to feel better.'

I hope that at least she has been informed that this figure is incorrect.

http://www.dailymail.co.uk/femail/a...pered-mortar-bomb--I-write-word.html#comments

That is so damaging.....it totally undermines the seriousness of ME...and if the message being put out is you can recover and get back to normal life....why would we need investment in biomedical research. As my cousin from the UK advised me...get a good nutritionist and sleep therapist and you will be sorted. If only gps would use the ICC criteria or IOM criteria where PEM is mandatory. Until then, we have people walking around diagnosed with ME that don't even have it.

 

[Skycloud]

I don't think we know how many get better, or all too often what is meant by 'better' when that word is used, or how many people have ME anyway. (Though the Nacul paper is a probably a pretty good go at prevalency in the UK, given the ridiculous circumstances around the condition.)

I agree @Sunshine3

 

[Awol]

However, the statement above worries me greatly - people with various medical conditions will swear blind that all manner of things helped them. Homeopathy or LP comes to mind,

The fact that these are the main named therapies on your site gives the impression that these are your go to treatments. You have not named other "therapies" such as LP so presumably you are not recommending these and bringing peoples attention to them.

To be consistent in your logic @Action for M.E. your website ought to present the lightning process, homeopathy and a host of other questionable treatments because there are patients who say they helpful

Not to take the thread off topic, just to say that Action for ME used to advertise the LP in their quarterly magazine Interaction.
I know this doesn't imply endorsement or recommendation, as advertising is just another means of revenue, however I think it's reasonable for members of a patient charity, most of whom are vulnerable by having untreated neurological disease or their carers, to be inclined to trust products or services advertised in the charity magazine, and the same principle applies to the discussion here about the way that Action for ME frame CBT, GET, GAT etc. on their website, which their former members and others have been kindly advising them for many years.

 

[Adrian]

Not to take the thread off topic, just to say that Action for ME used to advertise the LP in their quarterly magazine Interaction.
I know this doesn't imply endorsement or recommendation, as advertising is just another means of revenue, however I think it's reasonable for members of a patient charity, most of whom are vulnerable by having untreated neurological disease or their carers, to be inclined to trust products or services advertised in the charity magazine, and the same principle applies to the discussion here about the way that Action for ME frame CBT, GET, GAT etc. on their website, which their former members and others have been kindly advising them for many years.

I assume it becomes an issue for many patient charities with magazines that many of the companies who wish to advertise will be selling alternative medicine, unproven supplements etc. One of the reasons for not taking advertising here.

It could get worse with websites where advertising is dynamically delivered through google and targeted by the advertisers based on content.

 

[Awol]

I assume it becomes an issue for many patient charities with magazines that many of the companies who wish to advertise will be selling alternative medicine, unproven supplements etc. One of the reasons for not taking advertising here.

It could get worse with websites where advertising is dynamically delivered through google and targeted by the advertisers based on content.

Yes, I'm sure many patient charities are approached by companies with requests to advertise their products in their magazines and expect that it's a matter for the charity trustees or designated staff to decide whether to accept such requests. Bearing in mind that the Phil Parker Group was in contravention of trading and advertising standards regulations at the time and was marketing LP as a "cure".

The remit of the Advertising Standards Authority was expanded a few years ago and anyone concerned about advertisements in any media may submit a complaint, it's quite easy to do and only requires a question whether the product advertiser can substantiate their claims.

A way around regulations is covert advertising, e.g. by getting 'personal experience' or 'recovery stories' in the media.

 

[MEMarge]

A way around regulations is covert advertising, e.g. by getting 'personal experience' or 'recovery stories' in the media.[/QUOTE]

.......or persuading someone to do an unethical trial on vulnerable people, who then skews the results to show improvement where there was none

 

[Action for M.E.]

We have now published an updated information page on GET and CBT, which links to our landing page on treatment and management.

I do hope @Action for M.E. will make a concerted effort to remove all mention of GET,GAT, CBT and any other therapy from its recommendations.

The distinction between "recommending" and "offering key information to allow people to make informed decisions" is extremely fine. Surely if the informed decisions that visitors to AfME's website make is based on the information that AfME chooses to offer / not offer, this is just the same as acting on AfME's recommendations under another name. AfME's decision about whether to offer information on a particular treatment implies a recommendation. Or does AfME offer information on treatments that it wouldn't recommend in the interests of balance?

We know that lots of people coming to our website are looking for information about the treatment/symptom-management approaches that their GP or specialist has already referred them to. We would not be meeting the needs of those people if we removed all mention of GET and CBT from our website. Instead, our updated information page aims to give them what they need to make an informed decision.

It's great that you welcome feedback from S4ME forum users. I noticed on AfME's website that AfME have 3 forums of their own, where I expect they welcome feedback from their members as well. I'm therefore surprised that AfME haven't already revised their information about CBT and GET, especially as some S4ME members must also be AfME members and have raised concerns about the harms associated with the PACE version of CBT and GET on the AfME forums too. I don't understand why it has taken so long, and why you have had to come here (where you are very welcome) to consider revising AfME's information on CBT and GET. Haven't you had the same debate leading to the same feedback on your own forums?

Our forums are focused entirely on peer-support, so there is little discussion about the science and politics of M.E. That's not what our forum users come to our forum for. Given the robust debate and insight offered by forums like Science4Me and others, there would be little point in us duplicating such a resource on our own site, particularly when our users tell us that peer-support is what they find most valuable.

going back to the science aspect - if AfME agree that the results are questionable then shouldnt this be reflected in their public descriptions of these therapies?

I hope that's what our updated information page does now, and makes a better job of it than the previous iteration of the page, which I agree was not fit for purpose. Thank you for all your comments and feedback on this.

We are looking at our information page on pacing next, to reflect the format of the page on GET and CBT.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

[Keela Too]

I appreciate the addition of this statement on the AfME site: https://www.actionforme.org.uk/resources/questions-and-answers/what-are-get-and-cbt/

Thank you Clare, I think this will help protect new patients:

Important information

GET and CBT are recommended by the National Institute of Health and Care Excellence (NICE) in its guideline for M.E./CFS. However, this guideline is currently under review, and a significant number of patients, scientists and charities, including Action for M.E., do not support the guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E., given legitimate questions being raised about safety and effectiveness (see below).

It’s very important to note that there is no published research into the effectiveness of GET and/or CBT for those who are severely affected by M.E., and that these treatments are not recommended for severe M.E.

 

[Barry]

I hope that's what our updated information page does now, and makes a better job of it than the previous iteration of the page, which I agree was not fit for purpose. Thank you for all your comments and feedback on this.

We are looking at our information page on pacing next, to reflect the format of the page on GET and CBT.

That is really good Clare, many thanks.

However I would point out that @Action for M.E.'s statements here are still a bit misleading re CBT for PwME ...

GET refers to a systematic programme of physical activity or exercise that aims to support you to gradually increase your overall activity levels, while CBT is a talking therapy that is used to help people come to terms with changes in their lives. Some people find these approaches help, while others find it makes their symptoms worse. They are not suitable for people who are severely affected. Find out more about GET and CBT.

CBT is a talking therapy that is used to help people come to terms with changes in their lives. This can include a chronic illness, like M.E., or a mental health issue or significant life event.

[My bold]

Unfortunately the CBT applied to PwME is not always the 'normal' CBT by any means, but is a la PACE, which itself includes a non-trivial leaning towards GET. So although the above statements are normally correct, for PwME it is still misleading - CBT for ME is not applied just as a coping strategy, but also as an exercise encouragement strategy.

 

[Allele]

Thank you for letting us know, @Clare. This is a very strong step in the direction of best support for patients.

I agree it would be useful to clarify further the distinctions between types of CBT on offer, so patients could discern most easily which type they were engaging in, were they to decide to try it for enhancing coping skills.

Many thanks for this excellent update to your web page.

 

[adambeyoncelowe]

We have now published an updated information page on GET and CBT, which links to our landing page on treatment and management.





We know that lots of people coming to our website are looking for information about the treatment/symptom-management approaches that their GP or specialist has already referred them to. We would not be meeting the needs of those people if we removed all mention of GET and CBT from our website. Instead, our updated information page aims to give them what they need to make an informed decision.



Our forums are focused entirely on peer-support, so there is little discussion about the science and politics of M.E. That's not what our forum users come to our forum for. Given the robust debate and insight offered by forums like Science4Me and others, there would be little point in us duplicating such a resource on our own site, particularly when our users tell us that peer-support is what they find most valuable.



I hope that's what our updated information page does now, and makes a better job of it than the previous iteration of the page, which I agree was not fit for purpose. Thank you for all your comments and feedback on this.

We are looking at our information page on pacing next, to reflect the format of the page on GET and CBT.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

This is much better. Thank you.

I would reword this:

However, a number of studies disagree that deconditioning is the result of M.E. and/or CFS, rather than part of the cause.

I think you mean the opposite to what's implied. For example:

'However, a number of studies disagree that deconditioning is a major cause of ME, and suggest it is a result of the illness instead.'

Sadly, the de facto position among the UK establishment is still (wrongly) that deconditioning is a major cause of symptoms. The dissenters are those who reject this viewpoint.

 

[Sunshine3]

Glad to see another baby step forward for us, it's one hell of a mountain

 

[Bill]

That is really good Clare, many thanks.

However I would point out that @Action for M.E.'s statements here are still a bit misleading re CBT for PwME ...


[My bold]

Unfortunately the CBT applied to PwME is not always the 'normal' CBT by any means, but is a la PACE, which itself includes a non-trivial leaning towards GET. So although the above statements are normally correct, for PwME it is still misleading - CBT for ME is not applied just as a coping strategy, but also as an exercise encouragement strategy.

Correct me if I'm wrong @Barry (or others) but it has been my impression, across the pond, that CBT in the UK has also had a primary purpose in attempting to convince people they are not really sick from an organic illness, that it is all in their imaginations, and they'd get better if they stopped believing they had a physical illness.

Yes, no?

Bill

 

[ArtStu]

Correct me if I'm wrong @Barry (or others) but it has been my impression, across the pond, that CBT in the UK has also had a primary purpose in attempting to convince people they are not really sick from an organic illness and that is all in their imaginations and they get better if they stopped believing they had a physical illness.

Yes, no?

I was compelled to access CBT at a CFS clinic here via the phone because the clinic was such a long way from me, within just a few minutes of chatting on the first session I was told I didn't need CBT as I was doing okay as I was.

So I think it is the case that not all CBT is the type you refer to. However it certainly needs clarifying as to what is being offered.

 

[Trish]

Our forums are focused entirely on peer-support, so there is little discussion about the science and politics of M.E. That's not what our forum users come to our forum for. Given the robust debate and insight offered by forums like Science4Me and others, there would be little point in us duplicating such a resource on our own site, particularly when our users tell us that peer-support is what they find most valuable.

I appreciate that. I joined, but soon found it was not for me. I do understand that some people appreciate it.

I wonder whether AfME would consider providing links to other ME forums for those who come to your organisation for help and find they are not well served by your own forum. I for one would have really appreciated such information when I was looking for a place to meet and discuss research some years ago. If you already do this, I apologise - I haven't recently spent much time exploring your website.