NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

Just had a really helpful response from Clare Ogden at @Action for M.E. Thanks Clare :).

See attached pdf of AfME's 2001 UK Severely Neglected patient survey, as (loosely) referenced in the CMO's 2002 report.

Clare is more than happy for ME advocacy organisations to use it.

@Gecko.
 

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Thanks for getting this @Barry! Will add it to our submission.
I really do hope that the number of patient surveys showing pwme deteriorating after GET can somewhat balance Cochrane's latest outdated assertions - tho at least they now say they can't be sure if GET is or isn't harmful.
 
Gecko said:
at least they now say they can't be sure if GET is or isn't harmful.
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I think this could potentially be challengable. It is not about being 'sure', highly confident. When dealing with something being unsafe for humans it is the principle of 'beyond reasonable doubt' that matters, not certainty. The Boeing 737 MAX will have been grounded on this basis at the time - more might have been killed in the interval if high confidence had been insisted upon. (But it wasn't, because that's how it works).

It is true, at this time we lack high confidence evidence (scientifically speaking, I emphasise!) of harms from GET, but there is a plethora of medium confidence evidence to show beyond reasonable doubt there is a safety concern - this is all the bar should need to be set at, until further investigations can be done, or it is accepted the intervention is no longer viable.

In another post I've just written ...

https://www.s4me.info/threads/a-lif...19-naomi-whittingham.11379/page-2#post-206144

... where I wrote ...
The tipping point into harm may not yet be evident at the output, but may already be committed to and irreversible due to inputs already applied.
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Basically if BSP'ites try to convince that GET can be safely applied to pwME, with the notion of stopping if they look to be getting into trouble, it shows how ignorant they are of these things, where they need to be highly cognisant of them. By the time a pwME may start to show any clues of harms due to GET, it may be way too late, and the tipping point may already have been reached, with further evidence of that still rolling through their physiology and not yet visible.

I say that if anyone tries to assert GET is safe if done by a 'qualified' practitioner, the first thing to challenge is how they pull off the trick of seeing the invisible. Waiting until the slightest visible signs may well be way too late.

ETA: Not quite sure now if being "beyond reasonable doubt" is the threshold or just there existing "a reasonable doubt". There is a difference in level of evidence.
 
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Gecko said:
Thanks for getting this @Barry! Will add it to our submission.
I really do hope that the number of patient surveys showing pwme deteriorating after GET can somewhat balance Cochrane's latest outdated assertions - tho at least they now say they can't be sure if GET is or isn't harmful.
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@Action for M.E. also advised me the following, which I've been assuming you already know about, but just in case not:
new data gathered from two 2019 surveys:
  • our own Big Survey of more than 4,000 people (the results for this haven’t yet been published because there is a huge amount of data to go through. However key findings about access to healthcare as well as treatment and management will be presented at our AGM on the 15 October.)
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Amw66 said:
This is good to hear @Tilly .
Can i share this post with a closed facebook mum's group to try and ensure engagement happens?
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I thought I had responded to this, perhaps I missed it somewhere and wanted to update on how things are going. Angus is finding it hard going with his cognition or lack of it being what it is. I find the researcher engaging and patient.

The problem we face is that we know Angus has a lot to say but is having a problem getting out what he needs to say. We are working around it but it will impact on what is shown. Looking back and what happened is having a dramatic impact on him in the first instance. I knew things had profoundly effected him but no one can prepare you for the way a young person presents it. However, it has a positive impact when he reflects back on what he was able to say. That feeling of being able to say his reality for the first time to a medical person all be it on the end of the phone and not just be listened to be heard is vital not only for him but for the whole process.

Please share wide and far the more that go through this the better the understanding.

The other news I have and sort of related but not is that Gigi is now able to more fingers on demand, toes and now a whole hand. Whoop whoop and when I have a moment will do a proper news update but thought @adambeyoncelowe and @Jonathan Edwards would like to know.
 
Amw66 said:
I'm assuming that it's not a " temporarily closed" given the remaining timeframe?
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Exactly! I will try and find out roughly how many CYP were recruited, next Tues at AfME AGM. I have a nasty feeling it may be quite a small number, but the Parents' Facebook group have also conducted their own survey for submission to NICE.

I will also ask AfME re the ME info video by Emily Beardall and why it recommends GET.
They are sharing the results of their latest survey of PwME, which will hopefully show serious concerns re GET, so hopefully I can link in to that.
 
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