Myalgic Encephalomyelitis Community

Ritubmux???

I was wonder if ne1 had ne info on the Ritubmux (i no thats not how u spell it) trials that are going to be done in the uk?

Ive had M.E for over 20yrs & gone thro all the changing attitudes over the yrs from the 'lazy yuppy flu all in ur head' to now being a very serious illness (which ne1 with M.E cud tell u its just life destroying)

Guess with no nown treatment, im desperate enough to try nething!

Modafinial helped, but my new GP wont put me back on it as i came out of medical care for 3mths 

Ive read sum positive things about these trials in other countries

Can u try it in the uk?

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I am sorry I haven't any answers. I wish you all the best. Sending soft gentle Hugs. 

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Thanks

All i no from what ive read online is that the M.E association has the funding & is ment to be doing a trial with UCHL soon.

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Just up the road from me. 

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Really?

Do u no nething about it or how to get into it?

Ive emailed a few ppl but seem to b getting sent round in circles

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Sorry I have no info, I have been discharged from hospital, under GP only. GP has no info. 

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I have heard of Ritruixam or however it is spelt. Again have heard of a trial at uchl with m.e research UK.As far as I know they haven't started the trial on patients yet ,like yourself I would love to give it ago as have had m.e for 16years and it does ruin your life :-[ .I did hear they have started trials at a private clinic in the Netherlands I think???  But to go on the trial it costs thousands.It may be worth emailing m.e research UK as they may know more info.?

Take care x

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Hey

Thanks for the replies

As far as i can find out, trials have been done in sweeden & america, With a 60ish% of ppl reporting significant improvements,

But only if the ME is below a certain level, those with wot they call severe  me (mostly bed bound most the time i think) showed little to no improvement.

I will continue to email around & see if i can find out more, & put ne info about the trial i find out on here for those, like myself, that have reached the point they will just about try anything

Thanks guys

Take care.x

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