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Trial by Error: NICE Rejects My FOI Request

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
There was a significant improvement for the 6 mwt for GET over SMC only.

I'm sure you understand this distinction @Esther12 but for the benefit of those who don't realise:

"Statistically significant" could be a minuscule shift of most subjects' scores in one direction. (eg if the vast majority of subjects walked only an extra 3 steps in the 6 minutes, the statistics could well pick this up as a "statistically significant" result.)

Yet a "significant improvement" in the minds of the general public is really about the size of the shift. The improvement would need to be large and clinically meaningful to be regarded as a "significant improvement" in common parlance. (3 extra steps in 6 minutes would be meaningless to most people - and certainly not worth the effort of the intervention.)

I think sometimes a "statistically significant" outcome is played by the media as if it were a clinically meaningful "significant improvement".

The two things are quite different, but it seems few people understand this.
 
Messages
48
Location
The Netherlands

NelliePledge

Senior Member
Messages
807
Haven't checked but NICE do not appear to recognise the 2-day CPET test research/trials(?)
Maybe once the test protocols are more clearly defined further trials could be done/papers could be published and knock all GET research right out of the ball park(?)

eta:
http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/
yes this is one the UK charities should look at putting some funding to is there actually anywhere in the UK you can get this test done? presumably sport science people in the UK use this type of equipment all the time?
 

NelliePledge

Senior Member
Messages
807
@Valentijn

I assumed the 'patient representative' is an actual patient. Am I wrong? I can only think of one who would fit the bill. If it a patient, could it be the group leader/chair of the ME group of which Esther Crawley is medical adviser ? I have the impression he would be a PACE supporter.
that Colin bloke from Sussex seems a likely candidate he posts on facebook welcoming GETSET etc
 
Messages
2,125
yes this is one the UK charities should look at putting some funding to is there actually anywhere in the UK you can get this test done? presumably sport science people in the UK use this type of equipment all the time?
Not the 2-day CPET but the one off testing is used all the time to assess fitness for surgery, and also to test heart and lung function generally.
But as the NHS does not appear to include PEM in its list of symptoms(!!?, some vague mention of feeling tired post exercise) maybe this should be at the very least be one thing that should be changed/updated.

In fact shouldn't they be testing people with a 2-day CPET before putting them on a GET programme (both in practice and on research trials) to assess if it is 'safe'?
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
In fact shouldn't they be testing people with a 2-day CPET before putting them on a GET programme (both in practice and on research trials) to assess if it is 'safe'?

Please NO! Too many people report they are made quite ill by the 2 day CPET test. I wouldn't want to do it - even now my health is rather better than at my worst. Too much risk, just to prove a point.
 
Messages
2,125
Please NO! Too many people report they are made quite ill by the 2 day CPET test. I wouldn't want to do it - even now my health is rather better than at my worst. Too much risk, just to prove a point.

Not just to prove a point. It's got to be a better option than months of GET.

What I was getting at was that if they are going to subject hundreds of people to GET (which they say is perfectly safe, and as they have already been doing for years) then they should be making sure that it doesn't cause adverse effects before they start the programme.

If patients were offered the 2-day CPET, or able to request it, if they were considering (or being told) to do GET then it would be on their medical notes as an objective test.

The CMRC/MEGA team have said that PEM will be included as a prerequisite(once they've decided how to define it) this will probably be included in some vague questionnaire.
The current NICE guidelines included PEM:
"characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) "
The NHS do not use PEM.
But also this is for diagnosis, not to check if someone will adversely be affected by GET.

( the 2-day CPET protocols need to be more clearly defined to minimise risk to patients.)

eta: I am NOT saying all people with ME should do 2-day CPETs.
We know and understand the dangers of GET but those patients who either participate in trials, or have GET foisted on them, mostly do not.
 
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NelliePledge

Senior Member
Messages
807
Not just to prove a point. It's got to be a better option than months of GET.

also if it helps get private insurance or social security benefits to pay up some may be willing to take the risk - I might consider it if it would help me get an ill health retirement rather than a substantially reduced pension.

but i agree with Sly that the protocols need to be set out showing how to do it in least risky way
 

Jan

Senior Member
Messages
458
Location
Devon UK
Post-exertional fatigue, oh, if only. What I wouldn't give to just feel tired after too much exertion. Fatigue after exertion is what healthy people feel isn't it? They just don't have a soddin clue.

One of the charities should have done the 2 day CPET in this country, it is proof of physical disease and one of the most important studies IMO. Sometimes it seems that everyone wants to make the big breakthrough in research when replications of these sorts of studies could do far more good.

I bet NICE won't be taking any notice of these studies, but they might have if one had been conducted here.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Post-exertional fatigue, oh, if only. What I wouldn't give to just feel tired after too much exertion. Fatigue after exertion is what healthy people feel isn't it? They just don't have a soddin clue.
A few days ago I started taking TMG, after about 23 hours I'd come to the conclusion it was a dud, reports I'd read said people noticed a positive effect, if one was going to occur, within 15 minutes to a few hours. After 23 hours it seemed to do nothing to address the crippling PEM I had incurred as a result of about an hours trivial brain work a couple of days previously.

Then I suddenly noticed i could move, I could see clearly,and thinking was easier again. Yesterday I actually got a couple of small bits done on top of the bare minimum I have to do to survive. I was exhausted, I was fatigued, but it felt glorious, wonderful, compared with how I had been feeling only a few hours previously.

Fatigue feels good, healthy, in absolute terms, not just compared with how I normally feel let alone compared with PEM.

Today I appear to have DOMS, not a surprise, but again it feels good compared with normality. I have no physical or mental stamina today. but I am not PEM'd.

Of course how long the TMG will continue to work is debatable, based on what I've read probably not long, but I need the next week, which is why I've been trying apparently random stuff - after that I can afford the time to crash, if it happens