Trial by Error: NICE Rejects My FOI Request

[Invisible Woman]

I agree that being able to provide proof would be a wonderful thing but....I would rather a test that wouldn't cause harm.

We have no way of knowing just how much harm & how long the recovery period would be for each individual. If it cost me a week of feeling awful & being in bed -ok. If it cost me 6 months- no way.

 

[HowToEscape?]

A few days ago I started taking TMG, after about 23 hours I'd come to the conclusion it was a dud.....,
Fatigue feels good, healthy, in absolute terms, not just compared with how I normally feel let alone compared with PEM.
......
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

?? What is TMG? At this point I'm willing to try almost anything.

 

[Wonko]

?? What is TMG? At this point I'm willing to try almost anything.

This is the thread I read about it on.

http://forums.phoenixrising.me/index.php?threads/tmg-helping-a-lot-too.19546/

from memory it links to a few other threads about it.

AFAIK it's a used as a stopgap, to bring part of a secondary metabolic pathway online, while waiting for a methylation protocol to kick in. I don't think it's supposed to work on it's own any more than short term, so I'm hoping it will buy me the 15 or so hours of functionality I need in the next week but I'm not expecting it to keep working.

 

[Deepwater]

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.

I would wholeheartedly agree - I think most of us would - that we would absolutely not wish to see 2-day CPET used as diagnostic test, but I think it would be good to have more trials - using volunteers who understand the risks - in order to demonstrate beyond doubt that PEM is caused by an abnormal physiological response to exercise, because that would rob the medical establishment of their last feeble excuses for offering GET as a "best" treatment.

That would, of course, mean that we'd then need proper advice to doctors on safe means of distinguishing PEM from normal exercise-induced fatigue so that they would know which patients to diagnose with ME and tell to rest, and which ones might benefit from an exercise programme (the distinction may seem obvious to us, but it seemingly isn't to the average doctor).

Plus it always strikes me that PEM is used fairly loosely, even within the M.E. community, to describe several different things:
1) abnormal level of fatigue immediately following exercise or activity,
2) abnormally delayed recovery,
3) delayed-onset "crash" or worsening of symptoms (i.e. initially appearing to cope with the activity but then crashing anything from several hours to a few days later).
The last is the most distinctive type of PEM, but I don't know if everyone with ME experiences it.

 

[Snowdrop]

Plus it always strikes me that PEM is used fairly loosely, even within the M.E. community, to describe several different things:
1) abnormal level of fatigue immediately following exercise or activity,
2) abnormally delayed recovery,
3) delayed-onset "crash" or worsening of symptoms (i.e. initially appearing to cope with the activity but then crashing anything from several hours to a few days later).
The last is the most distinctive type of PEM, but I don't know if everyone with ME experiences it.

I think we could all stand the reminder of what PEM is and having a discussion around these. IMO all three are valid. I wonder if #3 could be used to help determine greater level of disability or not. I try to avoid PEM like the plague that it is however depending on circumstances I have experienced all of them -- not as a progression as I went from mild to moderate but it depended on how great was the over exertion I think. So #3 maybe not an indicator.

Also, when discussing PEM the horrible cognitive symptoms sometimes get overlooked and only the physical gets a mention.

And worsening of symptoms classically means flulike symptoms but can be other symptoms (cardiac, neuro etc) as well--is that two different PEM experiences?

I'm thinking being clear about PEM matters for purposes of sharing accurate information on ME with public/media etc.

 

[Deepwater]

I think we could all stand the reminder of what PEM is and having a discussion around these. IMO all three are valid. I wonder if #3 could be used to help determine greater level of disability or not. I try to avoid PEM like the plague that it is however depending on circumstances I have experienced all of them -- not as a progression as I went from mild to moderate but it depended on how great was the over exertion I think. So #3 maybe not an indicator.

Also, when discussing PEM the horrible cognitive symptoms sometimes get overlooked and only the physical gets a mention.

And worsening of symptoms classically means flulike symptoms but can be other symptoms (cardiac, neuro etc) as well--is that two different PEM experiences?

I'm thinking being clear about PEM matters for purposes of sharing accurate information on ME with public/media etc.

I agree - it is even more complicated than I suggested. There are lots of symptoms that can kick in but might not necessarily every time or for every person. But I think it is important to stress that we are not just talking about increased levels of fatigue.