This month's website question is asking whether people would be willing to take part in a clinical trial involving Rituximab – a drug which has been shown to be of significant benefit in ME/CFS in a small clinical trial carried out in Norway.
Please note that we are seeking YOUR OPINIONS only.
* The MEA is NOT looking for volunteers to take part in a clinical trial at this point.
* The MEA is NOT collecting names of people who might be willing to take part in a future trial.
If volunteers are required we will make a further website announcement.
Although we have made it clear that the MEA Ramsay Research Fund is very happy to consider funding a high quality clinical trial, and some preliminary discussions have taken place, no applications have been received.
Dr Shepherd has been in contact with researchers who have experience in using this drug in non-malignant conditions. We have obtained some very helpful preliminary advice regarding the way in which a UK trial should be set up – if we can find a suitable clinical group that wants to carry out a clinical trial.
Updated information on Rituximab and the Norwegian clinical trial can be found by clicking on the ‘Quick Link' immediately to the right of this news item.
I am disappointed to see that sufferers are voting overwhelmingly Yes! The fact that such a drug appears to work offers clues about our illness. But what an expensive, possibly dangerous, way of obtaining relief rather than cure. [I made myself very unpopular on another site by opposing the religious fervour with which XMRV was accepted. But even I could not have predicted the spectacular XMRV implosion that eventually occurred after millions of dollars had been wasted. Lets not go that route again.]
I don’t care how dangerous it might be. I will try anything. I am just worried that all the volunteers will be recruited from big cities like London. I live in Cardiff and I have never been given a chance to take part in any clinical trials.
@Longtimesufferer . There were recovered patients in the initial trial. Also, with more doses, more people might recover.
I don’t believe a cure will come from non-pharmacological interventions so if one is looking for a cure, one is likely to need to take drugs. And all drugs have risks associated with them.
It is also not good for us to be ill for all these years so doing nothing can also have a risk associated with it e.g. we might be at increased risk of conditions from a sedentary lifestyle which is not good in itself and can also bring on obesity. Then, all the oxidative stress, etc. may not be good for us.