Jo Best
Senior Member
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@worldbackwards thanks I'd missed that update on their site.
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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.
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.
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/
Lol, so much misunderstanding here.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.
I did this yesterday. And after @lilpink pointed (in the Opposing MEGA thread) out it is good to CC your own MP, I belatedly forwarded my email to him also.Just to post the link again for anyone wishing to thank K Hopkins for his persistent interest in asking Q's in Parliament:
hopkinsk@parliament.uk
[URL='https://www.theyworkforyou.com/mp/?p=24842'] Nicola Blackwood The Parliamentary Under-Secretary of State for Health
[/URL]
Well if they believe the evidence is that deterministic, then it will probably originate from some well known source, whereby effect precedes cause.What's the new data they're expecting?
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.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.
I did this yesterday. And after @lilpink pointed (in the Opposing MEGA thread) out it is good to CC your own MP, I belatedly forwarded my email to him also.
Just to post the link again for anyone wishing to thank K Hopkins for his persistent interest in asking Q's in Parliament:
hopkinsk@parliament.uk
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.
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)
- Hansard source (Citation: HC Deb, 25 November 2016, cW)
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)
- Hansard source (Citation: HC Deb, 25 November 2016, cW)
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
- Hansard source (Citation: HC Deb, 25 November 2016, cW)
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
- Hansard source (Citation: HC Deb, 25 November 2016, cW)
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.