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PACE and NICE guidelines raised in Parliament NOV 2016 MORE

Cinders66

Cinders66

Senior Member
Messages
494
worldbackwards said:
This is what NICE say

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.
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Reading the FOI released NICE correspondence that was discussed on here when printed a few weeks back, I interpreted it to be much more the IOM report and the P2P report which were rocking the NICE boat. Is it that the IOM criteria might be fully established as official in 2017 and that's what they're referring to? ie they can't continue with a NICE guideline, treatment approach and criteria and possibly even name if it's quite different from a much more recent and world recognised as valid US state one?
 
Cinders66

Cinders66

Senior Member
Messages
494
worldbackwards said:
This is what NICE say

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.
Click to expand...

Thanks for posting this. It's quite a bizarre document really. The uk NICE seem only to be looking at the american reports and guidance, not the rest of the research world, to draw conclusions on whether they can carry on recommending CBT and GET, which seems to be their desire? They seem to be recognising that uk cfs research might be on different people to those described by the new criteria which might affect if they can carry on making broad recommendations? To be honest if they can't grasp the illmsss ME as a subgroup or follow the research which surely suggests GET can't be the answer, then what hope is there of a good guideline?
 
slysaint

slysaint

Senior Member
Messages
2,125
Go Kelvin go!!!!
he's been asking more questions 25th NOV 2016:
Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred.

Jo Johnson Minister of State (Department for Education) (Universities and Science) (Joint with the Department for Business, Energy and Industrial Strategy), Minister of State (Department for Business, Energy and Industrial Strategy) (Universities and Science) (Joint with the Department for Education)
Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted.

Jo Johnson Minister of State (Department for Education) (Universities and Science) (Joint with the Department for Business, Energy and Industrial Strategy), Minister of State (Department for Business, Energy and Industrial Strategy) (Universities and Science) (Joint with the Department for Education)
Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Health, if he will remove CBT and GET from the list of treatments for ME patients.

Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Health, if he will institute a revision of NICE guidelines for chronic fatigue syndrome/myalgic encephalopathy.

Nicola Blackwood The Parliamentary Under-Secretary of State for Health
I refer the hon. Member to the Answer I gave on 23 November 2016 to his Question 53645.

He's not giving up. If you haven't emailed him yet to say thanks please do so now.

:thumbsup::thumbsup::balloons:
 
H

Humanrights

Messages
47
Jo Best said:
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/
Click to expand...

Rituximab
I looked this up on wekapedia not good it's used for cancer where 50% die like any cancer drug it more riskey.
Unless your ME CFS is going to kill you?
It's not worth it.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Humanrights said:
Rituximab
I looked this up on wekapedia not good it's used for cancer where 50% die like any cancer drug it more riskey.
Unless your ME CFS is going to kill you?
It's not worth it.
Click to expand...
Lol, so much misunderstanding here.

Personally, I'll explore rituximab treatment once it has gone through the necessary trials and will probably try it. I disagree that it's not worth it, you are over exaggerating the risks, and I've lost a lot of the last 36 years to ME, I want a chance of something approaching normal life before I get too old to appreciate it. Also, yes, I believe that the changes that ME brings to the body brings about a higher level of early death, so, yes, it can kill you.
 
I

Invisible Woman

Senior Member
Messages
1,267
It's interesting, someone close to me has been given the chance of trying an immuno-modulatory drug. They have turned it down as they are very scared of the side effects. Now, I know this person is struggling. They have a widely recognized disabling condition. They are also able to do far more than I can and go out an about regularly under their own steam.

Personally, if it's gone through the trials then I'll accept the risk. No question. My life has become so limited and uncomfortable it would be worth the risk.

ETA: would rather try than face another 20 years without hope of a realistic treatment.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Large Donner said:
Exactly what was her response?
Click to expand...
upload_2016-11-26_21-6-43.png

Nothing worthy of note.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Humanrights said:
Rituximab
I looked this up on wekapedia not good it's used for cancer where 50% die like any cancer drug it more riskey.
Unless your ME CFS is going to kill you?
It's not worth it.
Click to expand...
Patients need medical treatment options and rituximab may be an option for ME/CFS depending on the outcomes of the Phase 3 multi-centre placebo-controlled double-blind trial currently underway in Norway. The trials have been led by cancer specialists because they found that a patient's ME symptoms were relieved when she was being treated for B cell lymphoma and they traced the agent from the chemo cocktail to rituximab. Their research has proceeded with great care and caution over the years since then and they are now highly regarded as ME/CFS researchers.

The UK researchers (led by Dr. Jo Cambridge at UCL and advised by Professor Jonathan Edwards) are also world-leaders as their trials of rituximab in rheumatoid arthritis proved that to be an autoimmune disease. So the ME/CFS patient community in the safest possible hands with these clinical trials and if rituximab does become approved for use in ME/CFS it will be offered with information on risks etc. just as any treatment should be. One of the aims of the B cell research being done at UCL is to be able to identify which patients will most likely benefit. The Norwegian researchers are also doing various sub-studies at the same time, including trial of another drug.

ETA link to IiMER UK trial microsite - www.ukrituximabtrial.org
 
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F

FTY

Messages
75
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Esther12 said:
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.
Click to expand...

JE is saying that too. The point is that the results of the trial is not a foregone conclusion. If it was, there wouldn't be any point in having a trial in the first place.
 
H

Humanrights

Messages
47
slysaint said:
Go Kelvin go!!!!
he's been asking more questions 25th NOV 2016:
Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred.

Jo Johnson Minister of State (Department for Education) (Universities and Science) (Joint with the Department for Business, Energy and Industrial Strategy), Minister of State (Department for Business, Energy and Industrial Strategy) (Universities and Science) (Joint with the Department for Education)
Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted.

Jo Johnson Minister of State (Department for Education) (Universities and Science) (Joint with the Department for Business, Energy and Industrial Strategy), Minister of State (Department for Business, Energy and Industrial Strategy) (Universities and Science) (Joint with the Department for Education)
Department for Business, Energy and Industrial Strategy indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Health, if he will remove CBT and GET from the list of treatments for ME patients.

Kelvin Hopkins Labour, Luton North
To ask the Secretary of State for Health, if he will institute a revision of NICE guidelines for chronic fatigue syndrome/myalgic encephalopathy.

Nicola Blackwood The Parliamentary Under-Secretary of State for Health
I refer the hon. Member to the Answer I gave on 23 November 2016 to his Question 53645.

He's not giving up. If you haven't emailed him yet to say thanks please do so now.

:thumbsup::thumbsup::balloons:
Click to expand...

NICE GUIDE LINES.

The question is?
Is there a medical text book on
ME/CFS.

Or is NICE's Guide lines a load of hot wind.
Designed to save money.

John Caudwell said on his site there is no medical text book on Lyme.

Yet NICE seem to have cobbled ideas together.
Something that has gone round in medical circles for about 20 years then a tail gets added.
Despite the internet very few doctors have cotton on its a physical condition.

The psychatrists like interigaters try their drugs and only make the condition worse.
Then the blame game starts.

They make out Lyme or ME or cancer in in the mind.
That solves the problem.

Three lables cough, cold, depression anything else costs the health service money and does not excist only if you can pay for it.
 
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