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

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.

 

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?

 

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)

 

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.

 

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

 

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.

 

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.

 

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

 

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.

 

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:

 

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.

 

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.

 

This is much better. Thank you.

I would reword this:

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.

 

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

 

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

 

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.