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PACE and NICE guidelines raised in Parliament NOV 2016 MORE

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2,125
Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Health, with reference to the PACE trial, Pacing, graded Activity and Cognitive Behaviour Therapy, if he will ask NICE and the NHS to revise their approach to treating myalgic encephalomyelitis to removing references to Cognitive Behaviour Therapy and Graded Exercise Therapy.

Nicola Blackwood The Parliamentary Under-Secretary of State for Health
The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.

NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.
 

user9876

Senior Member
Messages
4,556
The question should also be what are the dept of health doing to act on misleading information about treatments from qmul. What actions they will take over the use of public money to cover up the misleading of patients and what will they do to ensure that the clinical commissioning groups have accurate information about such techniques
 
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2,125
Glad to see questions are being asked in Parliament even if they are just being brushed off.
Let's hope Kelvin Hopkins sticks at it.
Perhaps some thank you emails to him might help.

hopkinsk@parliament.uk
Just occured to me that this might be an opportunity to tell him about MAGENTA and FITNET and that there is currently a petition ie stop-get. He could raise the question about at least getting the trials suspended until publication of the reanalysis of PACE. http://www.stopget.org/sign-now/about-us/

Maybe if several of us emailed him?
 

Hip

Senior Member
Messages
17,824
NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.

That is good news. It sounds to me like they are awaiting the results of the Fluge and Mella phase III rituximab clinical trial, the outcome of which will be known in 2017.

I am guessing that if the phase III rituximab trial shows that rituximab puts into full remission and clinically improves a substantial percentage of ME/CFS patients (as the phase II demonstrated), then it will become untenable to view ME/CFS as a psychologically caused disease, and therefore untenable to treat it as such. So the NICE guidelines will have to be completely rewritten.


What I'd like to know is if the phase III results in 2017 are similar to what is being achieved by Kolibri Medical, Norway, with their private patients — Kolibri says that rituximab treatment cures ⅓ of ME/CFS patients, makes an improvement in another ⅓ of patients, and has no effect in the final ⅓ of patients — how long will it then take before the UK NHS are able to offer rituximab treatment to ME/CFS patients?
 
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13,774
Didn't one of the Rituximab researchers recently warn at a conference that the trial may not show evidence of benefit over placebo? If it is that word of results is starting to leak out in advance of publication, I wouldn't expect such positive results.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
British Establishment has backed the Wesselities to the hilt, they can't change their tune without great loss of face and power, so they WON'T, without a hell of a lot of reasons to do otherwise.
See how they have behaved in the past: they NEVER relent without overwhelming support against them and they NEVER punish the guilty and help the victims until they've denied it all the way to 90% of the victims' and criminals' graves and the Public have lost interest (or at least the crap won't affect the current government in office too badly no matter what scumbags did in years past...and by such support of abuses, crimes and stupidity, almost every government has been an accessory after the fact to a catalogue of crimes).

By giving Wessely two honours from "The Queen's Hand", the Establishment have set out their agenda and position in concrete...to shore up their weakening evil lying bullshit house of cards.

Only advantage we have is this government is so weak and screwed up that sufficient Public protest may have an effect above the norm.
 

Hip

Senior Member
Messages
17,824
Looks like this refers to it? Sorry, forgotten details:

Would you know if that comment was tweeted by Mella, or originated with Mella? I am not very familiar with Twitter, and always find it confusing figure out which tweets in a Twitter account are said by which people.

I find that both Twitter and Facebook are not very "brain fog friendly"!
 

user9876

Senior Member
Messages
4,556
Would you know if that comment was tweeted by Mella, or originated with Mella? I am not very familiar with Twitter, and always find it confusing figure out which tweets in a Twitter account are said by which people.

I find that both Twitter and Facebook are not very "brain fog friendly"!
The comment may not mean anything beyond a warning that because it is a trial the results are uncertain. I assume until the trial finishes they don't actually know.
 
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13,774
Would you know if that comment was tweeted by Mella, or originated with Mella? I am not very familiar with Twitter, and always find it confusing figure out which tweets in a Twitter account are said by which people.

I find that both Twitter and Facebook are not very "brain fog friendly"!

It was a tweet from PR's representative at the IACFSME conference, reporting on what Mella said.

The comment may not mean anything beyond a warning that because it is a trial the results are uncertain. I assume until the trial finishes they don't actually know.

Yeah, I wasn't sure when the trial was coming to an end. If others are assuming NICE has got word of the trial results, then that would be unlikely to be a positive sign.
 

Jo Best

Senior Member
Messages
1,032
I'd be surprised if "the expected publication of relevant new evidence" refers to the Norwegian trial, partly as I don't think the paper will be published until 2018 although with the time it takes to undertake the NICE review that may well tie in, but mainly because NICE recently said they take less notice of research done outside UK. On the subject of a UK rituximab trial, I started a thread with a recent update by UK charity Invest in ME Research. Their trial began with B-cell research in progress at UCL (first paper published, now on next phase) and the trial is planned to take place in Norwich, the base for the Invest in ME Research Centre of Excellence for ME. The UK researchers have been working all along with their colleagues in Norway (and other European countries). Fane Mensah is in Bergen now (and was also at IACFS) and Dr. Fluge and colleagues are visiting Norwich in January. Here's the thread - http://forums.phoenixrising.me/index.php?threads/uk-rituximab-research-update.47932/
 

Hip

Senior Member
Messages
17,824
I'd be surprised if "the expected publication of relevant new evidence" refers to the Norwegian trial, partly as I don't think the paper will be published until 2018 although with the time it takes to undertake the NICE review that may well tie in, but mainly because NICE recently said they take less notice of research done outside UK.

I read that the results of the trial will be made known in 2017, even though the study will not be formally published until 2018.

NICE seem to be saying contradictory things (or changing their mind), because the last comment NICE made, which I read on these forums somewhere several weeks ago, was that NICE were not going to review the ME/CFS guidelines at all, because they said there were no studies underway anywhere in the world that would have any bearing on the ME/CFS issue.

But now they are saying they will consider revising the ME/CFS guidelines in the light of an unspecified study whose results will become available in 2017.
 
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Jo Best

Senior Member
Messages
1,032
I read that the results of the trial will be made known in 2017, even though the study will not be formally published until 2018.

NICE seem to be saying contradictory things, because the last comment NICE made, which I read on these forums somewhere several weeks ago, was that NICE were not going to review the ME/CFS guidelines at all, because they said there were no studies underway anywhere in the world that would have any bearing on the ME/CFS issue.

But now they are saying they will consider revising the ME/CFS guidelines in the light of an unspecified study whose results will become available in 2017.

Yep, contradictory. I think what NICE decided to do was to bring forward their review of whether ME/CFS should be taken off the static list. I doubt they'd take notice of the Norwegian results until they're published. I was thinking this is more likely but didn't to tempt fate...

No.

Fingers crossed it's not that Crawley has great news about the Lightning Process.
 

worldbackwards

Senior Member
Messages
2,051
This is what NICE say
Is this guideline up to date?
In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check. Register as a stakeholderto be informed about the decision.
https://www.nice.org.uk/guidance/cg53

It won't be anything to do with Rituximab. They are unlikely to speculate on a trial that is incomplete anyway. It'll be to do with the reanalysis. I suspect it won't make much difference, but they might tone down their enthusiasm for something that doesn't work.