Rituximab: Finding that some patients with... - Ramsays Disease

Ramsays Disease

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Rituximab

Ian123 profile image
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Finding that some patients with Hodgkins Disease and CFS improved their CFS symptoms after Rituximab

immunomodulation by B cell depletion biomedcentral.com/1471-2377... further trials were carried out with larger numbers.

The results of this trial in 2011 ncbi.nlm.nih.gov/pmc/articl... had two positive outcomes, first it improved symptoms for 67% of those involved in the phase two trial, the second positive outcome was an apology from Norways Directorate of Health

euro-me.org/news-Q42011-003...

Bjørn Guldvog, Deputy Director General of theNorwegian Directorate of Health made the following statement;

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

The best may yet be ahead of us as stage three trials are underway simmaronresearch.com/2015/0... with the biggest trial that is actually four trials in one.

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Ian123
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Seascape profile image
Seascape

Cannot imagine apology from NHS

Ian123 profile image
Ian123 in reply to Seascape

Some of the politics that has been played with lives with the financial reasons for negligence and abuse investinme.org/Article-704%...

slowmotion profile image
slowmotion

Only works for some a short time like months you can be okay then sick again

Ian123 profile image
Ian123 in reply to slowmotion

General thinking seems that no one cause so no magic bullet that will cure everyone, many sub groups (phenotypes) within the same illness.

Helping some with biomedical research is better than treating as "all in the mind" for everyone.

Halflife profile image
Halflife

Ampligen FDA response fda.gov/Drugs/NewsEvents/uc...

We want to emphasize that the CR letter issued for Ampligen is entirely separate and distinct from FDA’s support of drug development pathways for CFS – these initiatives remain unaffected and fully supported. ME/CFS is a serious disease and treatments for it represent an important area of unmet need. We will continue to encourage the pharmaceutical industry to develop new treatments in this area. To assist companies with their development, FDA is sponsoring a workshop in spring 2013 focused specifically on ME/CFS drug development.

Unmet with no FDA approved drugs for SEID / CFS

Ian123 profile image
Ian123 in reply to Halflife

Big Pharma have a very strong political lobby they will take some moving or rather have taken some moving, as that battle with the FDA has gone on for decades as I hear it.

Stiller profile image
Stiller in reply to Halflife

I was at a conference in March when the story was been told of powerful groups stopping science. Tell me how my blood is not fit for donation when all I need is a talking to and some exercise.

plaguethebook.com/healing-a...

Ian123 profile image
Ian123 in reply to Stiller

The anti viral approach for treatment is getting some results

simmaronresearch.com/2014/1...

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Info from the ME Association about the New Social Care Act

http://www.meassociation.org.uk/2015/04/new-social-care-act-comes-into-force-today-and-we-have-a-lea

Can we have a poll or info gathering on how we are treated as Fibro/ME patients in the UK?