Hi Orla,

 

 
Quote Originally Posted by Orla View Post
CBS you wrote earlier:



I don't know where this came from, as I saw no one negating the experiences of the less severe. What came across to me was that the issues in some ways are very similar. Everyone from the severe to the mild do not need to be patronised and told to exercise, and for their doctors to be given misleading, opinion based advice, which will look to them like research and evidence based advice. The danger from over-doing it is much bigger than the danger from a small amount of under-doing it some of the time (a situation which is very rare anyway). But doctors are unaware of this.

Though severe people face particular issues, some of their experiences are very similar to the milder. All people with ME/CFS have limits to their activities, people cannot get themselves better through GET, and everyone wants proper research so we can get proper treatments.

But sometimes less severe people down play the concerns over exercise a bit, possibly just because they feel they can do a bit of exercise, or they think comments about exercise phobia and the like "obviously" don't apply to them, they can come across as dismissive of the concerns of the more severe. (I have come across this a lot elsewhere and find it disturbing)

But I am afraid that Cort (and sorry to name you Cort but it is going to be obvious to whom I am referring so I may as well come out and say it) is coming across as disregarding what long term and severe people are telling him, both about what the research is telling us, what their personal experience has thought them, as well as what some of us involved in groups for years have learnt from the experience of others.

This is in spite of his own admited lack of experience of this area, and his obvious lack of knowledge/understanding of the research into CBT/GET (I realise Cort that you may have focused on learning about other things, and that is fine, but don't then try to off-handly brush aside what knowledgable people like TomK are trying to say).

Gerwyn and Tom have pointed out multiple times (both here and elsewhere) that there is no evidence that GET works or that patients increase their activity on GET programmes. This has been admitted by its proponents. Mithriel has pointed a few times to the issue of context, which is critically important. (That is the context in which doctors are picking things up, and likely to read things etc.)

There is no evidence that severe patients can increase functionality through exercise.

I am afraid Cort that there is no point (or relevance) in deciding that you think that the sections on the severe are ok, if the severe people are saying it is not, and explaining why. No amount of comments along the lines of "it looks ok to me" (not an exact quote!) is going to make it any better.

I think part of the problem might also be the lack of awareness of the actual lives people lead when they are severe. The more severe a person is the more vulnerable they are to the whims of others, the less power they have and the less choices they have.

There is no point in talking in an abstract way about patient choice, the patient right to refuse exercise and the like, when they are living in a situation where they cannot make free choices. We've probably all experienced a degree of coercion and being forced/pressurised into doing things harmful to us, but the more severe a person gets the more this seems to happen. This is one of the reasons why severe people are up in arms about the CME material. As the stuff on the severe is the worst, and even the tone of some of the rest of it is problematic (for everyone but especially the most severe)

Instead of writing out something myself on this issue explaining it I am going to repost something Dr Yes wrote on another thread on this issue to illustrate this point.

+1 AND as Kim said:
http://www.forums.aboutmecfs.org/sho...m-the-Big-Talk

 

 

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline
[b]

That is:

1. GET and CBT do no good

_______________AND_____________

2. Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

__________________________________________________ _______
It is an immoral proposal and set-up, as a 'medical/psychotherapeutic' 'program' or 'therapy' for people with ME/CFS. It is a scam. It is fraudulence. It should not be done. It should be spoken against.
__________________________________________________ _______

Again, see:

http://www.forums.aboutmecfs.org/sho...m-the-Big-Talk

Maarten (who'll colour this red if he awakens, methinks)

P.S. And did, upon awakening. Two more quite different points I'll return to:

(1) I want this exercise BS OUT of the literature about ME as recommendation, as therapy, as subject to discuss with a doctor as a patient: It is medical sadism to impose this on ill people.

EXERCISE IS NO SERIOUS TOPIC FOR PATIENTS WITH ME UNTIL THEY ARE CURED.

I have at most 10% of the available energy I may spend on doing the things that come with being alive that I had 21 years ago. It is EXTREME STUPIDITY or else PLAIN SADISM to have to spend (part of) that on 'exercise'; to have to talk with this with one's G.P. (as I have had to do because of the dangerous medical freaks Blijenberg and Van der Meer in the country were I live) and to have to spend at least half the allotted time I have available to explain to my G.P. why I want NONE of it - and will turn VERY dangerous if ANYBODY gets it into his or her knoddle that I can be forced to do this with legal threats:

MAKING PEOPLE EXERCISE AS THERAPY FOR ME/CFS IS NAZI-SCIENCE

to use Hillary Johnson's term in "The Why":

-- http://oslersweb.com/the_why___a_spe...ndon_86981.htm

Here is my Dutch take on it in 2008 (long before knowing Hillary Johnson exists!), and look carefully at the illustration: Left you see me, my father or my grandfather right you see the Amsterdam dole chief and elderman - 'twould seem to me, caught authentically in a time-warped camera:

http://www.maartensz.org/log/2008/HimmlerInDachau.gif

Title: "Aan het werk, op welke manier ook"
__= "You MUST work, in any which way"
Link: http://www.maartensz.org/log/2008/NL080720a.htm

This was after they told me - who has rheuma in his hands - that I would be set to learn to cut glass IN A FORCED WORK PROJECT WITHOUT PAY so as to learn me THE PROPER WORK MORALS.

The phrase "You MUST work, in any which way" was and is Amsterdam and Dutch policy at present. You are being told, with a sadistic sneer, by Dutch dole-bureaucrats that if you are ill you are not integrated into Dutch society and that

"You MUST work, in any which way"

to achieve the infinite blessings of the right of calling oneself "integrated into Dutch society".

Well... any Dutch bureaucrat with the stark raving insanity to try to force me to play with what remains of my life and chances plays with his or her life and chances. It's as simple as that. My father and grandfather were not part of Dutch resistance in WW-II so that I could tortured slowly to death with cutting glass in order to learn at age 60 the work discipline the so-called integrated Dutchmen are supposed to have, according to the human sick degenerates that direct the Amsterdam dole.

I do not accept this sick degenerate inhuman sadistic way of treating ill people, never have and never will.

And I am also getting VERY sick of having to point out again and again and again that the whole topic of 'exercise' for physically ill people is a demented, obnoxious and evil idea to start with, also withhout any foundation whatsoever in real science or humane morality:

You just don't talk about 'exercise' for physical ill people until they ceased being physically ill

It's a VERY sick joke at best to even try.

(2) "And now for something completely different" but also VERY irritating:

Cort, can you PLEASE, PLEASE, PLEASE tell these vBulleting people that there are merits in an editor that preserves cursor-positions (?!) and that NOT to preserve cursorpositions after preview makes this awful editing horror they offer even more horrible - and that also this has been done by programmers since 1985 or so at the latest?!

And that meanwhile, in the course of just 2 1/2 months I must have lost tens of hours I could have spend MUCH better because their editor got stuck in a timewarp (before around 1974, if I use Smalltalk as a measure, who had the feature of cursor-preserving in a graphical editor at least 36 years ago).

Maarten - just woken up.