I refuse to get all hyped up though, we have been here before, and I am in no hurry to swallow Rituximab until absolutely proven beyond doubt, but it is still a joy to see biomedical research being done. However this pans out, it will surely lead to better understanding of the mechanism of ME. And they got their trial participants from patients who had been diagnosed by neurologists, there's a novel idea - get patients with neuroimmune illness and not patients with nebulous fatigue à la PACE trial.
Wonder how long it will be until the Wessely-led Science Media Centre will try and defy the story Gaddafi-style, frothing and spitting?
Update* Short video of Dr David Bell on this news.
Update** In light of this breakthrough, the Norwegian Health Directorate apologises for treatment of PWME.
Update*** Invest in ME's statement.
When are we going to get coverage of this research in UK media, never mind an apology from the bozos who run things here???
Update**** BBC coverage, finally. I understand the MEA persuaded them. Still, it beggars belief that the journalist felt it necessary to include 'death threats' in top five facts about ME. When is this appalling media bias going to stop? And no mention of apology by Norwegian Health Department, surely that is big news?
Update***** And The Daily Wail has also now covered, and informs us that CFS 'can last for a matter of weeks to several years'. Such high standards of research! At least no mention of THE THREATS. We should be grateful. (And you've got to love The Daily Wail's photo: next time I'm feeling crap I must put on mascara and pink PJs and grab a teddy. Though better than the oft-seen ME photo of a woman at her laptop in the office, with her head on the desk.)
Update****** From Invest in ME FB page re. 'death threats' reference: 'Our complaint to the BBC stated: 'In the article Immune system defect may cause ME By James Gallagher it is stated in the side information, under Chronic Fatigue Syndrome - "Some patients have sent death threats to researchers after disagreements over a cause or cure" This is only conjecture. There is no proof that patients have made death threats. You are only repeating what has been said by some newspapers who have not verified their facts. Where is the police report to validate this claim and how is it proven that any person suffering from ME has made any threat? You have no proof of this and this statement is pejorative and shows extreme bias against a sick and vulnerable section of the public. It is, in fact, discriminatory. We would ask you to remove this immediately' After our complaint to the BBC it seems that BBC have modified their comment - now stating - "Some researchers in the field say they have been the targets of abuse and death threats as a result of their studies." Still an unsatisfactory part of a tardy and insufficient response to the Norwegian research - and still heavily biased.'
Update* Short video of Dr David Bell on this news.
Update** In light of this breakthrough, the Norwegian Health Directorate apologises for treatment of PWME.
Update*** Invest in ME's statement.
When are we going to get coverage of this research in UK media, never mind an apology from the bozos who run things here???
Update**** BBC coverage, finally. I understand the MEA persuaded them. Still, it beggars belief that the journalist felt it necessary to include 'death threats' in top five facts about ME. When is this appalling media bias going to stop? And no mention of apology by Norwegian Health Department, surely that is big news?
Update***** And The Daily Wail has also now covered, and informs us that CFS 'can last for a matter of weeks to several years'. Such high standards of research! At least no mention of THE THREATS. We should be grateful. (And you've got to love The Daily Wail's photo: next time I'm feeling crap I must put on mascara and pink PJs and grab a teddy. Though better than the oft-seen ME photo of a woman at her laptop in the office, with her head on the desk.)
Update****** From Invest in ME FB page re. 'death threats' reference: 'Our complaint to the BBC stated: 'In the article Immune system defect may cause ME By James Gallagher it is stated in the side information, under Chronic Fatigue Syndrome - "Some patients have sent death threats to researchers after disagreements over a cause or cure" This is only conjecture. There is no proof that patients have made death threats. You are only repeating what has been said by some newspapers who have not verified their facts. Where is the police report to validate this claim and how is it proven that any person suffering from ME has made any threat? You have no proof of this and this statement is pejorative and shows extreme bias against a sick and vulnerable section of the public. It is, in fact, discriminatory. We would ask you to remove this immediately' After our complaint to the BBC it seems that BBC have modified their comment - now stating - "Some researchers in the field say they have been the targets of abuse and death threats as a result of their studies." Still an unsatisfactory part of a tardy and insufficient response to the Norwegian research - and still heavily biased.'
14 comments:
Am hearing Gaddafi has been captured, excellent news! And hopefully, symbolically, means Wessely has shut the hell up with his somatoform rantings, channelled by the entire UK media last August.
http://english.aljazeera.net/news/africa/2011/10/20111020111520869621.html
...if Gaddafi is indeed captured and dead, Wessely satire aside, this is truly wonderful news for Libya.
wow. ritixumab. interesting, fingers seriously crossed.
From Dr Speedy's blog:
http://niceguidelines.blogspot.com/2011/10/how-does-rituximab-work.html
Rituximab made easy: Q & A sheet http://www.meassociation.org.uk/?p=8459
When I mentioned Gaddafi earlier I had no idea he had just been captured and killed - he is now irrevocably part of this blog post.
Some of his famous rants here, he does really remind one of a certain psychiatrist and his own delusions...
http://english.aljazeera.net/news/africa/2011/09/20119493450743624.html
Like you, my reaction to the latest breakthrough miracle cure was cautious, and I'm not about to get carried away with it all. The fact that the trial was only 15 people and 5 failed to make a any significant improvement makes me rather cynical. Of course, I WANT an effective treatment and I would have the treatment if it was offered to me, but it was only a small trial and it's very early days. We don't know whether the results will be as 'good' in any subsequent trials with larger patient samples. So, like you, I'm sort of leaning against the wall with my arms folded (metaphorically speaking, of course).
hey susan, yes, fingers crossed.
hey dig, i think because we have not been respected, and denied decent biomed reseearch for so long, this kind of news is in danger of being overhyped, always.
but it is interesting that 67% made such big leaps, that surely is significant, at least teaches us abt mechanism of the illness in a subset of patients.
but it is a scary drug and i wd need to think hard about taking it. i wd also be afraid i would be made worse as i was by plasma exchange and immunosuppression in 80s... though maybe that was a case of getting worse before getting 'better', as i did start to improve a year later...only to relapse when i tried to work p/t in london... but i think if was still severe & bedridden i would try anything, but now i want to hang on to what i've got, prob like you!
So much see-sawing atm with hopes and hopes dashed for any help with M.E. I'm leaning against the wall with you..arms folded, legs crossed, chewing gum and looking surly.
Anyone want a ciggie while we wait ? :O)
However, Rituximab is v interesting in that it has proven to be v good with RA too..especially in combination with the more established DMARD drug Methotrexate so we shall see....
I agree with your caution about these research results, and obviously larger trials need to be done, but in medical research terms, 15 out of 20 patients constitutes a very successful result. Look at the PACE trial - a third of patients experienced modest benefits and it was hailed as a breakthrough!
My main concern is that this does get picked up and researched further on a larger scale. There are so many leads that could be picked up and run with in ME research, and we hear them dismissed as "too small to be significant" but if larger groups or government took an interest and followed them up I'm sure we'd be a lot further on than we are.
Being bed bound, I am impatient for someone to study this drug further, however naturally cynical and cautious I feel!
Sorry, I should correct myself. I wrote 15 out of 20 patients in response to digitalesse's comment, when I meant 10 out of 15 - two thirds basically. Still a very good result, although the trial is too small.
And incredulously UK media has not covered this at all??? - is the Lord of False Belief Systems stopping this news getting out?
hey cusp, yes, the autoimmune therapy is v interesting to me, esp since i developed recurrent uveitis in 2009. i am totally off steroid eyedrops now and am touching all the wood i can find it doesn't ever come back!
hey amy, i certainly hope that there are spin-offs in knowledge from this trial, if not a permanent breakthrough! to think our government squandered almost 5 million on PACE, it just never fails to shock when you think back.
I also haqd to laugh, well snort, at the daily wail's photo. Please! do they think we are all teenagers in pink pyjamas wanting our mummys.
I almost feel like getting someone to take a photo of me when i am my worst... grey and dribbling barely able to open my eyes, and sending it to all the papers..."free stock photo of ME/CFS for you".
that aside i laughed when you called 'our 'friend'' the "Lord of False Belief Systems"... i thought oh yes thats a good name to refer to him with... the Lord of FBS.... then it sprung into my mind what those intitials could also stand for... luaghs like a drain.
ps glad yr eyes are better.
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