Almost ten years – is GET going?

Graham

Graham

Senior Member (Voting Rights)
This is just a short note in response to the probability that GET is going to be dropped from the NICE guidelines, along with that particular form of CBT.

There have been many people working to achieve that over the last ten or more years: we have lost some folk, some have had their health deteriorate, some remain anonymous even though their contributions were enormous. There were many more who did what they could within the limitations of their more severe illness, and every little helped.

I think this is something that we should be really proud of: such tenacity over so much time, and yet with one of the worst chronic conditions. We should remember those who paid a price (and who are still paying). But I think above all, we should take stock and realise that we can succeed. I'm really pleased that I managed to be one of those cogs, and to have met and worked with so many of you.

That's it for now. I'll go back to being silly now.
 
Watching from outside the UK, we are very happy that NICE is coming to reason (and not “came” until the release of the final guidelines) thanks to the immense work of ME advocates. But although this is a step forward, remember that most countries either officially recommend GET, or do not have clinical guidelines for ME as of yet and thus GET is routinely prescribed there.

Many efforts are required before GET for ME is scraped worldwide, and sadly more people will be harmed until then. Thankfully, the burden of advocating against GET eases a little with every country that drops it.
 
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cassava7 said:
Watching from outside the UK, we are very happy that NICE is coming to reason (and not “came” until the release of the final guidelines) thanks to the immense work of ME advocates. But although this is a step forward, remember that most countries either officially recommend GET, or do not have clinical guidelines for ME as of yet and thus GET is routinely prescribed there.

Many efforts are required before GET for ME is scraped worldwide, and sadly more people will be harmed until then. Thankfully, the burden of advocating against GET eases a little with every country that drops it.
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Hopefully though, if the UK's NICE really does come through and fully deliver the goods, that would set a very significant precedent to hopefully boost advocacy in other countries.
 
The funding by NIHR and MRC for the DecodeME study is a huge plus. They are beginning to consider the biomedical science behind it.

Plus, there are many doctors/nurses/other healthcare workers developing Long Covid and appalled at the disbelief/gaslighting and psychologising that they are getting. Many are showing more empathy for PwME.
 
I'm worried about GETset Julie, how will she manage? We're very very selfish indeed putting our needs before hers, and we should all have a long hard think about what we've done.

To be serious now, I was very happy, but now I'm feeling more deflated. A post 'is GET gone' (PIGG) reaction. It was clear that removing GET would make it obvious how little there is in the way of treatment to help us, but it's still not comfortable to read it in draft guidelines. I think I can also hear the creak of big guns being turned towards us so I'm bracing myself.

A sense of humour helps. As does your post @Graham - it's true and thank you for saying it.
 
Skycloud said:
I'm worried about GETset Julie, how will she manage?
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She can take a hike! :laugh:

We have made significant progress with the draft guidelines - even if they are revised before they become their final version. We should allow ourselves to celebrate the win while accepting we still have a very long way to go and this struggle far from over.

I'm really grateful to everyone, whether I know who they are or not, who has contributed over the years and whose cumulative efforts got us to this point.

I'm also very grateful for everyone managing to read and comment on the draft guidelines. I'm not in great shape at the minute & not really retaining much information & so figure if I can't contribute then at least I'll try not to hinder!

You are all heroes, it's a shame so many are unsung heroes for now.
 
MEMarge said:
The funding by NIHR and MRC for the DecodeME study is a huge plus. They are beginning to consider the biomedical science behind it.
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I think all the NIHR committee members that examine and choose which research applications they approve for public funding, should have to attend training by Jo where he delivers the content of his evidence submitted for our guidelines to them - in person, to enable genuine learning...
 
Simbindi said:
I think all the NIHR committee members that examine and choose which research applications they approve for public funding, should have to attend training by Jo where he delivers the content of his evidence submitted for our guidelines to them - in person, to enable genuine learning...
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Something to raise when the PSP unanswered questions survey comes out in 2021.
 
Hard to see GET recovering from this assessment

Graded exercise therapy
Adults
Evidence from randomised controlled trials were identified for graded exercise therapy. Six studies compared graded exercise therapy to usual care, two studies to flexibility/relaxation, and single studies compared graded exercise therapy to heart rate variability feedback, adaptive pacing, intermittent exercise, and activity dairies. The quality of the evidence ranged from low to very low quality. No evidence was identified for mortality, care needs and impact on families and carers. The severity of ME/CFS was mixed or unclear in all of the studies and one study included young people and adults.
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From page 319 of https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7

Something that can be passed on to Cochrane as well, I'd imagine.
 
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