My Label and Me: I’m not tired and lazy, I have ME

He now has a facebook page and is promoting Kings College it's in his blog https://my-me.blog/ you can follow his journey. That will be fun

 

It would also be interested to get an idea of what in real life people understand by GET, both the clinicians providing it and the patients experiencing it.

Recently I was reading a thread on a UK Facebook support group, where several people commented on how GET helped them. It seemed that those commenting were not then still receiving the intervention but did have ongoing symptoms. One comment, which I possibly am now inaccurately paraphrasing, said something along the lines of 'when I am going through a bad patch I use a few days of GET to get me back on track'. The next commentor seems to be saying they used GET in a similar way. So whatever this is, it certainly is not PACE GET. I assume this is some form of establishing a stable activity baseline or activity management. In effect getting yourself to step back from the maelstrom of daily life and working out where your current energy envelope or limit is.

In the past I have also read informal descriptions of GET that sounds more like some form pacing with occassional gentle pushing at the limits of the envelope to know where the activity ceiling currently stands.

The first stages of GET, establishing a stable baseline with activity levels within the threshold of triggering PEM/crashes are not necessarily different to some approaches to pacing or spoon theory. For most of us the problems with formal GET come with the increasing of activity/exercise in arbitrary increments beyond envelope limit with deliberate instructions to ignore or deny any adverse reactions.

Presumably a sensitive practitioner providing GET will, perhaps unconsciously, modify it to avoid or minimise the negative consequences of doing 'too much'. So with anecdotal commendations of GET, can we be sure what they are commending.

I have noticed similar threads in relation to sleep issues, where people have taken from their OTs advice, the need to establish a very rigid clock ruled daily schedule, going to bed at exactly the same time everyday, getting up at the same time every day and undertaking daily activities at the same time for the same amount of time everyday. The posts I have come across are usually people who blame current sleep issues on having veered off their rigid schedule and seek to use reestablishing the schedule as management/treatment for their sleep issues. Is this really a sleep hygiene strategy or is it an indirect way of keeping daily activity levels within an individual's energy threshold?

Presumably most of us have the belief that relapses and remissions happen or don't happen spontaneously according to the nature of the individual's underlying condition or for external reasons we do not yet understand. We further have, with some evidence, albeit not fully conclusive evidence, the belief that for everyone with ME over exertion exacerbates our condition in the short term and in the longer term triggers relapses. Beyond this I suspect a fair number of us also speculate with a weaker evidence base that over exertion interferes with any spontaneous recovery that might for some people be happening. If this is the case then there are very specific circumstances where PACE type GET may actually facilitate recovery.

If the patient is experiencing spontaneous recovery and GET is undertaken in such a way as to manage total daily activity as well as just the exercise periods, and if the arbitrary increases in activity imposed are within the concurrent levels of spontaneous recovery, this may have the unintended consequence of preventing over exertion that would block the spontaneous recovery. In this situation, by luck rather than good management, ignoring the negative effects of exercise is irrelevant as there should not be any.

Presumably any spontaneous recovery is more likely to occur in the earlier stages of the condition, and is also believed to be more likely with young people. The author of this article when previously using GET was a teenager without the need to worry about some of the complexities of daily life (ie preparing meals, shopping, etc) so with a supportive education regime may have been able to incorporate his whole daily routine into the GET programme. So under this explanation, GET did not cause his recovery, but it did facilitate it; GET had the unintended side effect of stopping over exertion arising from the uncontrolled vicisitudes of daily life.

Group studies do not provide reasonable support for the efficacy of GET as a treatment for ME, despite the beliefs of a number of researchers, but could it be that for some of those individuals that believe it 'cured' their ME/CFS, that they did have ME/CFS as we understand it and that their experience of GET, 'as much by good luck as good management', facilitated their spontaneous recovery.

Most of these evangelists with a 'cure' to sell, have an experience of 'recovery' associated with their 'cure'. It is human nature to seek causal connections, and it could be that in the right circumstances such as diet modification or GET had a facilitating effect that reinforces the individual's mistaken belief that there was a causal relation. Unfortunately seeking to replicate this in other circumstances is likely to result in disillusionment or even harm.

 

Thank you @Andy, for the sections from the NICE guidelines on this. It does look as if persons with severe ME are treated differently, perhaps with more care. A small mercy. Again, this looks like hedging their bets. "Just in case this is a real disease, we better be careful; we don't want to look like monsters."

 

The NICE guidelines point to warn pwsevere ME about prolonged bed rest causing postural hypotension may be correct, however, ironically, this OI may be one of the main reasons a pwME is bedridden in the first place.

I had occasional OI during gradual onset. This while still exercising a great deal, and working full time. So, not bedridden, and still had OI.

 

https://twitter.com/user/status/1096408650455896064

 

one of his blogs:

pure BPS PACE stuff.

 

That pretty much brings us to the heart of the problem from a PR perspective. This version of how things happen is reasonable and believable. Except for this illness.

Personally, I don't think there is a lot we can ever do about this until some mechanism of what has gone wrong is found. Even if people are told by others who've been there before many people are going to have to discover this for themselves sadly. The reasonable model is not correct here.

If we had an accurate test for who has ME then at least we'd weed out those who 'got better' and went on to climb mountains etc because they had some other thing going on.

 

Karl Morten said that he tested patients before and after GET and found no improvement in metabolic abnormalities.

A publication of these results in a formal study would put an end to the claims that exercise treats the illness (instead of perhaps just one of its consequences).

 

Climbing mountains is is easy. What's difficult is finding a suitable bonsai mountain and having it transported to under my foot.

 

I suppose if you believe King's previously 'cured' you, and are about to cure you again, you will accept at face value their explanations and rationales. It is a normal response to accept what these highly educated professionals are telling you, especially if it seems to accord with your experience and world view. (It seems from supportive comments on Facebook forums from his family's connections that he is part of a world that is not only interested in sport, but is involved in a social life linked to sports clubs.)

Also if you are being encouraged by King's to 'go out and save the world', it must be very flattering.

Let's hope he does not suffer too much if second time round GET is not the 'cure' he is expecting. It is an especially worrying possibility that this public commitment to a potentially harmful treatment may put him more at risk of doing 'too much', more at risk of harm.

 

Which one of the quack treatment promoted the idea of not talking to anyone else with the disease and going around to your friends and families claiming that you have recovered in a system that basically mirrors the 12-step process of AA?

Sounds a lot like this. "Committing yourself" to the treatment by believing in it and not giving yourself the option of "falling back". Hopefully he does not actually have ME, otherwise I doubt KCL will talk much about him once he stops being able to play along with the "process or recovery".

The duck quacks and it quacks a lot.

 

I expect since he's KCL's poster boy for ME they will likely be rather cautious with him and also very supportive and attentive.

 

The sad part is he's not going to recover using their programme...

 

If he keeps doing the soft GET where reducing activity levels is allowed in response to an increase in symptoms, then he could spend a year or two trying to recover with GET. If in that timeframe a recovery caused by passage of time occurs, he will likely attribute it to GET.

 

The problem is that both AfME and MEA publish " recovery" stories with no caveats. They should make it clear that these are anecdotal reports and that there's no OBJECTIVE evidence.

 

I wish this chap well with his struggle to det well. However, ther more I consider it the more out of place it seems to me for a support charity to post stories like this. I do not think one of the arthritis charities would be likely to post stories of people getting better with unproven treatments - or in fact even with proven treatments. Perhaps they do these days but it seems inappropriate.

It seems to relate to this idea that different people benefit from different things so why not let everything be available.

 

If this young man does have ME and worsens with GET, it isn't likely the public will hear about this.

I wonder how structured the PR will be about this. How involved is the College with media outreach on the project?
Was this fellow carefully selected for this media promotion? Is money exchanging hands? Does this fellow meet the CCC, or the ME-ICC criteria?

 

Good in the article that ME is acknowledged as a neurological condition;not good that the treatment/cure touted for this serious condition is GET/CBT.

What other serious neurological disease can supossedly be cured with counseling and exercise? None.

 

Hello, I'm new to the boards, but I have been following for a while. The photo credit in the Metro is more used to seeing her work in loftier grander titles.

Most of the other photo credits in the Metro are from agencies, photographers with less pedigree. Why she was used in the blog and in the Metro seems strange. Maybe she is a personal friend or a friend of a friend. If your cynical like me you might suggest that this is all done through a PR agency and he might be a patsy. Who commissioned the photographer would be interesting to know.

 

The same thing is happening here, with the understanding of what GET is - sort of morphing into something else.

There's been a few heated discussions in patients groups, where people that have had 'GET' sessions with a physio, don't understand why patients organizations etc are so against it. What they describe is more like pacing and activitity management, underscoring they've been told to listen to their body and limits etc.

I think this is happening in large part, because these theraphist never have read up on what GET really is? More likely just taken their common sense understanding, and combined it with the knoweledge that ME-patients must avoid doing to much/crashing.

That's sort of good, in one way, but it adds a layer of possible confusion to public debates (that we have more or less ongoing).