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

Hiya - This is an old version and I'm not sure why it's still online. I will make sure it's deleted! This is the current version:

https://www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf

 

Thank you @Trish, I will make sure we clarify this.

 

I enjoyed Nick Lane's book on mitochondria " Power, Sex, Suicide: Mitochondria and the meaning of life" and his other books as well. He looks at how energy is used by the cell and a lot of it felt relevant, but my brain doesn't retain that sort of information any more, unfortunately.

Some people use complicated heart monitors and I think it does help them a lot but I am too ill to do much nowadays. It fascinated me that my heart rate reflected the way I felt. I wish I had known about stuff like that in my more moderate days so it would have told me, or rather gave me confidence, to stop.

Now, I just have a quick check of my fitbit and if it is too high I stop for a minute till it goes down - so one shoe on, rest another shoe whereas before I would have finished the task.

Workwell talk about switching to anaerobic respiration at a lower level than normal. Thinking about it, it must be that we go into emergency mode with normal activity, our bodies think we are running for a bus when we are just standing up. So would it be that ATP is not being produced quickly enough or that oxygen is low, or some of the chemical chain is blocked? My mind goes blank when I try to work out the biochemistry.


I do not know what the Workwell people mean by training the anaerobic system. In the videos I watched they spoke about ways of working to cut down on energy use such as putting chairs half way up some flights of stairs. The one I liked best was to put all the shopping into separate bags so that you could put away all the frozen stuff first, rest then do the fridge stuff, then have a long rest and do the everything else much later. I have started to think about activities in that way.

 

For some? In other words, you're saying that for most people increase in activity is possible. Isn't it the same GET paradigm in disguise?

 

I think the emphasis needs to be on holding back and not trying to do too much rather than trying to increase activity. We are all desperate to be more active and do not need any encouragement. An emphasis that many (most?) patients cannot increase activity would be good.

The BACME stuff needs to go, with a note of explanation that AfME does not endorse or agree with BACME recommendations.

Thanks for listening.

 

I see pacing as a means of preventing decline. I see no point in dangling a carrot called “increase” in front of patients who really need help to down size their lives!

Only when I let go of “increase” did I slow the rate at which my health declined! But, no matter what I did, I couldn’t halt it.

Not, at least, until I had some treatment that changed my baseline. Then I had no difficulty “increasing” but only up to the new threshold. Then once again “increase” became impossible. I’m in a better place than in 2015, but I must still be VERY cautious about what I attempt.

I wrote a little about the period of “increase” I experienced after the treatment that helped me:

http://sallyjustme.blogspot.com/2017/02/get-out.html

IMO None of us need to have “increase” suggested ANYWHERE in recommendations for ME.

 

In other words DITTO to @Robert 1973 ‘s comment.

 

I generally think BACME are suspect and unaccountable. CMRC are better, as they're more transparent and appear to be turning over a new leaf. If you need 'clout' behind your recommendations, they'll do.

Even with the loosest criteria and best conditions for success, PACE still failed to show meaningful improvement. Rates at 'CFS' clinics are also terrible. So I think you're safe in saying that CBT and GET don't work, without qualification.

I know there's a worry that patients might miss out on 'supportive' CBT for ME, but there's no evidence that they get that anyway. It's closely wedded to the theory of GET. Given that, and the fact that IAPT means it's easier than ever for anyone to access CBT if they really want it, I don't think you need to promote CBT either. The distinction between 'directive' and 'supportive' is lost on the lay person, and clinicians have said as much that they would see no point in offering supportive-only CBT.

I think whoever your patient reps are, it's a good idea to insist that evidence trumps anecdote, and we shouldn't be scared to say 'we know very little' or that there aren't any recommended treatments for this illness. Doctors will attempt symptomatic relief for sleep and pain anyway, as there are guidelines for management of those already. It's better to have no recommendations than harmful ones.

 

Harrumph. "Some" is not good enough. That should be the default assumption for all people. The normal reaction to getting ME for most people is to rest until they feel better, then try to build up slowly again. It's intuitive, nobody needs to be taught that. It what works for most ailments. Most ME sufferers find after trying this a few times (over 9 months in my case) that it doesn't work, and often it results in a long-term worsening of their condition. So to have to listen to talk of GET, or even "appropriate increase in activity levels", is particularly galling. We've all tried that, and since learnt that acceptance of limits, forgetting all idea of building up again slowly (because it always results in running into a wall and a worsening of the condition), and trying to limit the damage and not to decline, is the best we can hope for until the science catches up.

I'm sorry that accepting that there is no current path to "recovery", and no effective way to "increase activity", makes so many people feel uncomfortable, but that's the way it is. I really wish AfME would accept this instead of promoting dodgy nonsense from people who won't listen to patients. It's vital to let go of the goal of "appropriate increase in activity" to prevent further damage. Some sufferers do improve over time (I have), but that's a time-scale of years, a result of recognising your limits and staying within them, and if improvement comes it comes, but it's nobody's fault if it doesn't. Aiming for an increase in activity is an idea that really has to be let go of.

 

But why would an increase in activity levels be attempted, without treatment of the underlying problem? Why would increasing activity levels be the clinic's focus? Why would you expect it to be possible?

 

That much is obvious, because they believe that the problem is caused by decreased activity levels, that the underlying problem is decreased activity levels, so increasing activity levels should fix it.

An ME charity (people who are supposed to actually know about ME) with influence believes that, or so their public stance, including the current version, would strongly suggest

 

It's hard to avoid that conclusion, @Action for M.E.

It would make more sense if you were explaining to patients to expect there to be hard limits on how much activity they can do; not that they need to establish some possibly mythical baseline and then that they need to work up from that.

 

One step forward two steps back.....

Interestingly I believe that’s also the experience most people will have trying to increase their activity levels in the way you endorse.

*Edited to clarify this is just an opinion*

 

Found this presentation of hers on MUS;
"
Elicit patient beliefs and concerns about symptoms, provide positive
diagnosis if possible, biospychosocial explanation of symptoms, initial
management, refer to appropriate step above or offer integrated care
within this approach."

https://www.networks.nhs.uk/nhs-net...oning-community/documents/medical-unexplained

 

Perhaps we should collect those experiences like yours, @TiredSam? After reading @Trish 's blog ( https://www.s4me.info/threads/this-could-happen-to-you-blog-article-by-trish.5465/) and @Hutan 's proposal for ME care ( https://www.s4me.info/threads/what-do-we-want-me-care-to-look-like.5547/ ), I think it would be good to have some research in this area: successful pacing (does not mean of course that those who deteriorate just don't have the right pacing strategy, but if we could provide some patients' stories who were able to stop or slow down deterioration with pacing, that could perhaps justify to look in this more scientifically, in particular with the newly diagnosed. Might also be something @Action for M.E. could support. Because that is something the PACE trial did not: investigating pacing properly. This is another topic, though.)

 

You appear to have missed @Suffolkres actual question

 

Bob and I were members, way back. We objected, and to Colin's push on the Lightning Process, and he became very unpleasant about it. It is far from a democratic organization.

 

Thinking about my own early days with ME, I carried on working for 2½ years (no diagnosis, no-one acknowledging how ill I was, mortgage to pay), so I really was in a bad state when I finally quit. Walking 100 yards was a real struggle. (So was walking 100 metres, with a French accent.)

As I rested, I slowly got back to what I would call my baseline. But that was a very slow process (a year or more?). It's easy to mistake the progress I made that year as 'increasing' from my baseline. I think I was well below my baseline, and it took a lot of time to recover back up to that level. Since then, I found I could take the dog out for gentle ambles of between 30 and 45 minutes. Now I know that is well beyond what many of you can do, and I'm genuinely grateful that I am so lucky, but that is my limit. No matter how I try, I cannot bump it above that without getting payback.

So I tend to agree with @TiredSam : I'd need to see pretty impressive proof that people can improve from baseline, and pretty good evidence that they were truly at baseline in the first place.

Age, by the way, is eating into my baseline!

 

The very first ME association newsletter I read (about 1985!) had an article which said that ME patients had a "ceiling" to how much improvement they could make. Some people could make a dramatic increase but then it would plateau, others were already living at their limit.

I agree that the only useful advice from health professionals is to do less. I've never met or heard of any person with ME who did not do too much if they had the slightest chance - and I don't mean "boom or bust" is a sensible theory either. If we had a treatment we would all be doing more tomorrow.

If all these so called ME specialists actually spoke to patients they would know that.

 

So far as one can tell from reading Wessely et al the reasoning was that it was shown to be beneficial in other conditions, therefore it was assumed that it would be beneficial for CFS. They may not be good at critical thinking.