Action for M.E.'s big survey, 2019

Having received GET from an NHS clinic I’m surprised that they make such a big thing about it. I saw the OT 8 times and all she did was talk for 20 min, ask me how I was doing and encourage me to keep going (you have the best chance of recovery in the first year she kept telling me). The method of increasing slowly by 10% taking your time until you are jogging for 20 min doesn’t seem to be trained, more just parroted from the nhs literature already in the public domain ?

Most of our talks were around me asking her to send letters to my employer over adaptations and return to work. I did ask how to apply GET to strengthen my arms (since at the time I thought the weakness there could be resolved). She didn’t know what to do about that and checked with an expert ...no help or advice from either of them.

She did offer advice on GET not in the leaflet...when I fed back that jogging was making my joints very painful and it seemed to make me worse; she gave me contact details of a local store that sold expensive trainers doing gait analysis first (film your feet while you jog on a treadmill). I took Mrs Sloth since I was worried about collapsing after the treadmill bit.

Needless to say after £100 worth of trainers ..I didn’t see any improvement in the pain.

I’m at a loss to understand how all of this constitutes as expert advice?

 

I was under the impression that jogging had been pretty thoroughly debunked.

It's just walking with more joint stress, with none of the positive physiological effects of actual running.

For maximum, controllable. physiological gains HIIT is apparently still the in thing, or was last year.

Of course not appropriate for PwME, but you'd think if they were going to prescribe inappropriate exercise then they'd at least prescribe something that stood a chance of giving the greatest payoff for least time.

 

Jogging?

Tried that in 1980. Didn't work then. No reason to expect it to work now.

If only some of these doctors would listen to the shared experience of patients.

 

I think so too. The categories don't make much sense to me. 30% to me means you can just about mobilise in your own home, if at all. That's not taking a very short stroll outside.

 

The difficulty is that it is a fluctuating condition. I can quite imagine that someone who is generally at 30% might occasionally have periods within a day when a short walk may be possible. They might well pay for it, but it might nevertheless be worthwhile.

 

I don't fit any of those descriptions.
They are far too specific and that they describe what people at each level should be able to do is not helpful.

As you say, what is the evidence for this?

 

I agree this is just a nonsense scale.

Given that it is so skewed towards the severe and very severe end, it looks like this is designed to downplay the moderate and mild group.

It clearly has no basis in reality.

I would be 80% on this scale ..even though on the MEA one (also a bit rubbish) I’m 60%. I can do full time work with limitations and only for a certain type of work (desk based using skills gained before I got sick).

If you look at the phrasing it’s also missing vital frames of reference and the phrasing is designed to downplay symptoms. If you were 100% recovered, why doesn’t it reference back to what you could do before for example ?

I’ve had to change my previous job to take out direct reports, project management, factory elements, customer visits and the 45min drive to work.

That is the only way I can work full time. What if I were doing an even more physically demanding job before I got sick ..? It ignores the variation in job type and skill loss from the workplace .

It’s just the usual BPS manipulations and AFME need to ditch this completely rather than yet again being a lapdog to pseudo science.

I think this topic would be a great new thread where we could all perhaps design a new scale? Anything we come up with is got to be better than this rubbish which I’m sure hasn’t been validated.

Just an idea?

 

I haven't taken the survey. Is there any mention of orthostatic intolerance? Given the recent thread on this, it would be a serious oversight if it's not included.

 

The idea of creating a new scale is a sensible one. I considered doing separate ones for cognitive and physical function, but that might be too complex.

 

I was under the impression this had been discussed before, with, as usual, no definitive conclusions reached.

ME sucks.

 

Yes I think you are right one scale would be easier.

We might want to think about method to eliminate the BPS style bias as you fill it in.

Perhaps make this contexted to how you were before you got sick (although this may be tricky for young people with ME).

Sorry thinking aloud ...I’ll shut up now.

 

OK, I have been thinking a lot about reference scales for illness and I have come up with this which gives another way of seeing how you fit.

An important point to emphasise is that in each category you can be mild or severe and it can vary.

Here goes

1. Normal health. You are not restricted in doing things by your health but occasionally you get an infection or have an accident but when things heal you are back to where you were.

2. You have a chronic health problem which flares up occasionally, like a bad back or migraines but when it goes you are back to normal health.

3. You have a chronic health problem which needs something done every day to control it but if you stick to a regime you experience normal health. This is things like taking a thyroid supplement to sticking to a gluten free diet or things like diabetes.

4. You manage to stay independent at work or school but only if you restrict your life. This is the spoonie section. You need to consider everything carefully.

5. You can no longer manage life independently needing benefits and help (even if you aren't getting them you need it) As I said you can be mild on this scale or severe, it is the way chronic illness is affecting your life that is important.

6. Unable to perform any of the activities of daily living and struggle to manage any sort of life.

My hope for ME is that we reach level 3 living.

I doubt this sort of scale could be used alone but it might help give people a way of looking at how their illness affects them and could be useful in conjunction with other ones which list symptoms.

 

I can tell you that you CAN'T stop and re-start. Earlier this morning I did up to Q27, moved onto next page, and then shut down the tab containing the questionnaire.

I have just gone back to the questionnaire, to find that I'm back on page 1.

Just filling in the part that I did took me 13 minutes, and that included a page of questions that were for children and young people so not for me to fill in.

@Action for M.E. can you explain how to pause the questionnaire and then go back to it?

 

[these threads might be of interest]
https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/

several scales (including hummingbird where cognitive and physical are split)
on this thread https://www.s4me.info/posts/106919/

I think one of the big problems with all these scales is that they don't base them on how you were before you fell ill, and they don't always make it clear if the use of mild, moderate, severe applies to severity of symptoms as opposed to a generalised level of disablility.

 

I wonder whether there us a way to build a composite score from both types of restriction with weighting? Plus also a comparator to previous activity?
E.g.
So physical = 20%
Cognitive = 60%
% of previous activity with pacing = 35%

Perhaps then do some maths to build a composite score from these?

I think the questions need to be about capability over a period of time to iron out day to day fluctuations. Its possible that types of particularly restrictive activites could be given more weighting than others in the score in a questionnaire (e.g walking, Reading, lifting, talking in a conversation ). Things that you would need to do for a job without specifying the type of job.

E.g if you ask a question about how much you can walk on average a week with 5 options

Or how many pages of a book can you read on average without taking a break?

Or there could be a section on levels of activity that trigger PEM

The objective of a score is to say how restricted people are in their everyday lives I guess ..so if you are physically or cognitively restricted or both at different levels it should help others to understand level of disability.

Again thinking out loud...I’m sure there is loads already out there we can look at for other illnesses/conditions.

 

Thanks. Yes, I remember looking at these. I'm not sure how good they are for the reasons you mention, but also because they overlap significantly. For example, both mention work, so which category do you score work in? Do you separate physical and mental 'work'? How? Is teaching physical (standing, pacing, demonstrating) or mental (thinking, explaining, engaging) or is it both (shouting)?

It does start to get quite complicated. The MEA is probably my favourite of the lot, though splitting the physical and cognitive components might make more sense, so that people can be 30/60 or whatever. But then that's precisely where it gets messy.

I also like the idea of it being relative to previous levels of activity.

 

https://twitter.com/user/status/1128580254874861573


NS Sherlock

 

This is after 2 decades of promoting a complete and permanent "cure", without reliable evidence. Same outcome in Australia with 2 decades of it being official policy. No measurable improvement whatsoever. At what point does it become criminal neglect to promote an obviously useless at best and harmful at worst ideology despite there being ample evidence that it is a complete and total failure?