Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

Learning from the quotes above this one would be a bare start

What is it your afraid of that you have to play both sides and only move slightly when your position is completely and utterly untenable?

An organization that claims to be a patient centered one has no business harming patients then lying about it and attempting to protect itself from the consequences of its own actions. If your going to keep playing both sides to presumably keep the pressure off your backs then your continuing to harm patients who have already been harmed by your previous actions. Who needs enemies when "allies" do the enemies' bidding.

Prove that your supportive statements are not just more empty promises.

Absolutely, i seem to recall an argument that went something like if GET/CBT were abandoned then ME clinics would have nothing to offer and that would cost jobs. So harm people as a means to maintain employment and feel useful...

Too bad. Hiding behind lawyers means harming patients, not what a patient advocacy group should be doing. If this is the reason for mealy mouth apologies and playing both sides then the organization would do less harm by being dissolved. Something that is definitely worth considering.

 

Just to say there were significant concerns about Esther Crawley’s BACME from outset, in 2010, and any organisation that today actually uses BACME as a frame of reference raises a red flag as far as I am concerned. https://www.meassociation.org.uk/20...ing-role-of-new-body-for-mecfs-professionals/

 

Hi, Clare, We met at the Scottish Parliament Unrest event back in January of this year and you kindly and enthusiastically applauded/endorsed my contribution. As someone who has lived with ME for 36 years and who has seen the hideously harmful psychologisation play out in UK, I was really pleased to see Action for ME apologise for its earlier support of PACE, I think your charity will gain a lot of respect for doing so. However, any ‘positive’ reference to BACME is highly questionable, and you cannot honestly expect pwME to support that. Thanks, NASIM

 

I suggest we ask them and challenge on this?

Not sure if this has been superseded but it is still on the net!

https://www.actionforme.org.uk/uploads/me-and-work.pdf
Legal context
6
Equality Act 2010
6
NHS Plus guidelines
7
CIPD guidance
8
Rights of carers

 

Agree entirely, we are stuffed as a patient population when it comes to PR, we have no one go-to charity to help us, it is all so fragmented, but I think given the politicisation of the illness this is not going to change. And heavily politicised movements always result in fragmentation. But we definitely need better PR, a universally respected Goliath who will stand up to the constant barrage of nonsense we have to correct. But given the multiplicity of criteria we have for ME and the hybrid ME/CFS - the conflation will always be problematic - I can’t see anything changing soon.

Edit: Just to add I am hugely grateful to charities we do have, partic MEA, MEResearchUK and Invest.... And Tymes Trust does sterling work for children w ME. Just vexing all so fragmented from PR pov.

 

I'm afraid that isn't the case. They use animals in research. Those of us who disagree with such use, including myself who has studied the subject intensively, will not give to such research, as it is worthless. I will not say more here as my brain has packed up, but direct you to my Phoenix Rising pages written when I was more able:

https://forums.phoenixrising.me/ind...her-slams-requirement-for-animal-models.1691/

There are several more posts on animal models.

 

I think that’s why we need #MEAction. The main charities, especially AFME are built on the model of working with the establishment. AFME devotes a lot of time to Scotland but is often talking about working with the government, with the MRC and the collaboration etc. But you can’t collaborate effectively with people with opposing views and it seems that once people do start collaborating then the critical tone , still needed, is substantially muted as people don’t dare rock the boat which might threaten the crumbs they’re counting on or the relationship they’re trying to foster. Iime who do speak out have become isolated, the theee other smaller charities focus mainly on supporting their specific group or pure research funding and that leaves MEA & AFME leading advocacy together which isn’t a brilliant combination in my view.

I think the MRC cynically brought off the charities at the time of the Gibson report which was supposed to bring change, when they brought them onside in 2007 for an expert group with the promise of funding which took four years to materialise and the CMRC subsequently.

Action for ME whilst finally openly breaking from PACE didn’t have to show allegiance with the bacme but they wanted to because it’s a charity built on the model of working with establishment bodies to bring about proper care but as I say with ME the MRC, NICE, royal colleges, medical schools NHS and government haven’t been on our side and as well as embracing the behavioral model have been sluggish and I different to our cause. The only way to get the advocacy reflecting the voice of patients is to have an advocacy grouplile #MEAction which is prepared to act more like a protest group and have its own clear agenda, clear demands and are prepared to mobilise the infamously very disgruntled patient group to achieve them.

 

Sorry I have not read through this thread yet, so others might have made the points I am about to make. Afme might have in yesterday’s statement acknowledged the harm caused by their involvement in PACE - a PR damage limitation exercise in my view, though still welcome - and also made clear they do not support the deconditioning theory, the basis of PACE. However, they are still up to their old tricks as they also say in their statement that they support the -

“the aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted”

So they may now have rejected PACE and the deconditioning theory but they still are pushing the aim to increase activity levels eventually. The emphasis on still increasing activity eventually reminds me of the new recent contradictory changes on treatment put up on the CDC website that also say the ultimate aim is to increase activity to normal levels of activity.

They cite BACME recommendations and Van Ness to justify their support of eventually increasing activity levels. In the BACME document Afme refers to in their statement BACME are now promoting the non evidenced central sensitivity model of ME which claims people with ME have become sensitised to normal levels of activity. This central sensitivity can according to proponents of this non evidenced model be overcome by gradual increase in activity, akin to someone with an allergy slowly being introduced to more of a substance that they are allergic to to build tolerance. The BACME document says this will lead to recovery. Danish psychiatrist, Per Fink, promotes this non evidenced central sensitivity model of ME and BACME invited him to their conference this year.

As said, they also cite Van Ness to justify the aim, once stabilised, to increase activity levels. They quote Prof Van Ness saying in a letter to American healthcare providers that “management approaches are best achieved through pacing that utilizes energy conservation techniques mindful of heart rate limits. Only then can careful training of the anaerobic energy system, (ie, improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle) be initiated” However, they don’t make it clear that Van Ness has said elsewhere the aerobic system in people with ME is dysfunctional and no amount of gradual increase in aerobic dominant activity can heal the dysfunctional aerobic pathway. Most activities of daily living involve utilising the aerobic pathway predominantly.

 

Perhaps we could invite Mark Van Ness and Workwell to comment, as they have been cited in AfME's statement?

It seems reasonable they be made aware of AfME 's statement and given a chance to support, clarify or distance themselves.

 

It is a shame Desmond Tutu is not still amongst us ( other than a joke reference to degree grades).
What we need is a worldwide council for truth, hope and reconciliation..

 

There were people who raised the issue of the VanNess wording before. In my view, it was wholly naive to say that aerobic training can be done eventually and then to admit aerobic systems are busted elsewhere. That first statement was always going to be leapt on by those looking for target-driven rehab.

VanNess should issue a retraction and replace that letter (though he may already have done so), and then contact those who've quoted the original to inform them of the update.

ETA1: The letter actually says 'anaerobic' rather than 'aerobic', but it does mention 'careful training', which sounds a lot like 'graded exercise'. That's where the root of the problem seems to be.

ETA2: Actually, he has said this before (that aerobic exercise can be attempted eventually), just not in this letter. See this post: https://www.s4me.info/threads/actio...-e-position-statement.5532/page-4#post-100183

 

This is why I wonder if it would be worthwhile to contact him-

Firstly, so if AfME are being word-weasels and twisting/ "interpreting" Workwell's comments, they are held to account and publicly corrected .

Secondly, to make Workwell aware of how easily their comments can be misconstrued and twisted and how damaging that can be for patients. They need to be far more careful how they say things, in my view.

Eta - crossed posted with @adambeyoncelowe

 

I had a Twitter convo with Todd Davenport re Workwell’s use of the word “increase”. He said they would discuss it next time they all met. Seems they are in no hurry however. Sadly. Meh!

Edit to add link to relevant thread
https://twitter.com/user/status/1019299957201887232

 

Perhaps this could be the prompt?

If they are aligning themselves with BACME's philosophy, then at least we know where we are with them.

If not, I doubt they would be happy to find themselves allied by implication.

I don't tweet, but would anyone be prepared to contact Workwell, providing a kink to AfME's statement and possibly a link to BACME? Then it's up to them to decide where they stand.

 

@adambeyoncelowe, where has Van Ness said aerobic training can be done eventually? His quote Afme cited from his letter to healthcare providers doesn’t mention aerobic training, just careful training of the anaerobic system. In the letter he says:

“management approaches are best achieved through pacing that utilizes energy conservation techniques mindful of heart rate limits. Only then can careful training of the anaerobic energy system, (ie, improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle) be initiated”.

As I said above, AFME when citing that Van Ness quote don’t make it clear that Van Ness has said elsewhere the aerobic system in people with ME is dysfunctional and no amount of gradual increase in aerobic dominant activity can heal the dysfunctional aerobic pathway. Most activities of daily living involve utilising the aerobic pathway predominantly.

 

Sorry, it's the 'careful training' bit which gives rise to the problems. 'Careful training' sounds a lot like 'graded exercise'. I'll clarify above.

 

A days work? More like 3 minutes - all they need is a page that says "We are really sorry for all the harm we have done with the total bollocks we have, up until now, had on this site. As of now this site is shut down until we figure out that as a patient charity we should promote and advise in the interests of PwME, and how to do so, safely. If we cannot agree on how to do this we will close AfME. Again, we are really sorry we harmed PwME and that we ignored them when told, repeatedly, that we were doing so."

Set up a redirect so all page requests redirect to that page, delete all other content..

Simple, quick, cheap.

 

In this 2010 paper:

Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Todd E. Davenport Staci R. Stevens Mark J. VanNess Christopher R. Snell Tamara Little
Physical Therapy, Volume 90, Issue 4, 1 April 2010, Pages 602-614,
https://doi.org/10.2522/ptj.20090047

It's clear what was meant, but I find the language confusing. I would have thought all activity below anaerobic threshold is technically aerobic.