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

Not a recommendation.

https://metro.co.uk/2019/02/14/my-label-and-me-im-not-tired-and-lazy-i-have-me-8571106/

Of course AfME shared it though
https://twitter.com/user/status/1096026336110497793

 

Alternative interpretation: he was bedbound for a while, but then improved which allowed him to increase his fitness through a GET program.

 

...which probably would have happened anyway.

 

magic cure !!! or relapsing/remitting ME. or fluctuating ME.

 

We so desperately need good data on the long term course of ME.

 

Well, if graded exercise helped him he's allowed to tell his story of course. The CFS diagnosis is very heterogeneous and post-exertional malaise is not a required symptom, so it's possible that some people with the CFS-label find GET to be helpful. This corresponds with the data in patient surveys.

I really don't like the last sentence though:

This seems to suggest that other patients could recover as well, if only they had the discipline to do so.

 

This is from James Wilson's blog:

 

What the heck @Action for M.E.

Have you read the article that promotes GET and CBT?

Looks like I just need to discipline myself more in order to “recover”.

 

He’s probably just repeating what he heard at kings. The bps people usually assert 1/3 can recover but that would be Fukuda oxford NICE CFS with perhaps unusual definitions of recovery. People who get better do sometimes unfortunately seem to think everyone else could if they were also as committed, dedicated positive etc.

 

Like patients not recovering, even deteriorating haven’t tried enough and don’t know they’re own best? Anecdotes. Always so easy, missing all complex factors that can impact on recovery. Good for him, but not very helpful.

 

Give credit where it is due. His blog post does seem to be called "It's all about M.E" which might imply that the observations ae not thought to be generalisable.

 

He's allowed to tell his story but 'finding GET to be helpful' does not equate to being helped by GET. I see no need to suggest his ME is atypical. In adolescents significant improvement or recovery seem to be fairly common and will likely occur at a time when treatment is being provided but that does not mean the treatment caused the improvement. Moreover, his subsequent relapse sounds familiar enough for ME. I hope he recovers again but it is clearly not guaranteed.

It is interesting how hard it is, whether for doctors, charities or patients, to accept that ME may genuinely be a 'chronic neurological disease'. Everyone wants to be optimistic but for lots of other conditions the long term nature of the problem is accepted - diabetes, scleroderma, hypertension, bipolar disorder, Parkinson's disease, whatever.

I am not suggesting one should be totally gloomy. There are lots of PWME known to the forum who have reached a stable enough condition to lead reasonably satisfying lives, just like lots of people with diabetes, but in either case there's rarely true 'recovery'.

It has taken me a long time to get head around this. But the key question is simple - if ME really is a chronic neurological condition, as it says, why the heck should exercise make it better?

 

For me a good thing in this article was making the point that for some at least who 'recover', relapses do occur.

However ME/CFS does seem to attract people that fall for the logical fallacy of 'going from the specific to the general'. Because something appears to work for one person does not necessitate that it will work for everyone, but that does not stop the steady stream of people that become evangelical about their personal 'cures'. This is why medicine by anecdote is bad.

Also it is important to remember that individual counter examples, anecdotes of harm, do logically allow us to say that for example the blanket statement 'GET is good for people with ME' is not true, but in contrast examples of it apparently working for some does not allow us to say the statement is true.

 

If he thinks it is a neurological condition, but is starting a course of treatment at King's, one wonders whether they have shared with him their views as to the "perpetuating" factors. Still, I suppose he has given informed consent.

 

Usual cop out answer used by both AfME and the MEA when they share dubious articles
https://twitter.com/user/status/1096079463354388480

 

I was poor, I was hungry, I found a pound in the street and bought a lottery ticket. I won £23,00,000.

Why are you still hungry, are you too lazy to buy a lottery ticket and help yourself out of poverty?

ETA - fictional example of the attitude shown, where blind luck is taken as the way things work.

 

Your last comment always makes me think of the ugly sister trying to get her oversized foot in the glass slipper for the kingdom. Never going to work no matter how hard you try and make extending activity if you have PEM after reading a book, how do they think extending your walk distance is going to cure ME.

I think the problem here with accepting that ME has no full recovery is that we have been drip fed false accounts of recovery. As they would say in CBT and GET world what is recovery? We are also told that unless you think there is possibility of recovery you (as patient or carer ) are not doing your job. This idea gets stuck with everyone, due to this kind of reporting; "You don't want to say you have to be kidding me" to the people that are telling you about the journey to recovery, but that is what is shouting in your head. This is what is so wrong with this article.

The questions needing answers here are
1/ What was his recovery? was he able to live a full and active life as we would recognise it? My son's paediatric tells me that they had recovered but they are unable to work full time, not able to doing extra things with their children without resting
However they are not in the state they once were where they were bedbound. They still think after telling me this I should extend my sons activity level. Now to me this does not sound like they have recovered, but living at a better level of life? This could go down again if they do not get the balance right when they are hit say with another stressor to their body.
2/ What level is he at now,
3/ what caused his down turn in his health or ability to keep active. This is the most important one that I would like answered.
4/ Did he have PEM when recovered and what sort of PEM does he have now.
5/ Over exercising for anyone is bad just ask top trainers, it is considered toxic to the heart.
We need to look just as closely to those that have got better and then relapsed, why and how will enable us to understand so much more about ME