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Rituximab, Chronic Fatigue Syndrome -- A Treatable Autoimmune Disease

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#1 Zac


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Inviato 29 ottobre 2011 - 16:20:45

Source: http://www.huffingto..._b_1028341.html

Chronic Fatigue Syndrome -- A Treatable Autoimmune Disease

Chronic fatigue syndrome wrecks people's lives. It does so physicially, socially and economically. Appearing "normal" yet not being able to think or work causes enormous hardship compounded by many doctors who think the illness does not really exist -- a position health and disability insurance companies are more than happy to endorse. And those who firmly believe it exists are often stumped by how to treat it -- beyond stretching, physical activity and psychotherapy.

Now a new study out of Bergen, Norway adds much to the data that chronic fatigue is an autommune disease. If not entirely definitive, it points in the direction that many CFS sufferers and clinicians have argued for decades -- that the illness is a disorder of the immune system, is preceded in most cases by some kind of infection and continues to provoke multiple debilities for a long time.

The Haukelund Study:

Many ideas for clinical treatment occur from observing the clinically unexpected. In this case, the Haukelund Hospital researchers were struck by a patient with lymphoma and CFS whose fatigue also improved with treatment. They decided to treat 30 people with CFS, mainly young (average age 37.3 for those treated and 31.5 years for placebo) and female (80 percent) with rituximab, a potent anti-inflammatory monoclonal antibody that markedly depletes B cells. None of the patients allowed into the study were suffering from endogenous depression, which afflicts a large number of CFS sufferers. None of them showed evidence of the XMRV virus, which previously had been reported as more common in some CFS sufferers, though critics felt such studies were methodologically flawed.


Some major findings were:

1. About two-thirds of the study group saw their fatigue (self-rated) as considerably improved compared to only 13 percent of the placebo group. Cognitive and other functions also improved, though not necessarily as much.

2. Effects were delayed. Some patients only showed improvement 6-7 months after treatment with the drug, and none quickly.

3. Some people showed marked long term improvement, but only a few (more or less complete in 2/15 on rituximab and 1/15 on placebo at 30-33 months.)


A. This is a small study. The number of people treated was not large, the placebo group had the disease longer, and as the authors are very aware, this study needs replication and expansion with ongoing treatment arms.

B. The study group may not be reflective of the majority of CFS patients, many of whom are older, have other intercurrent autoimmune problems (about one-fifth of the study group also did) and who often suffer from depression and sleep disorders.

C. Though the authors believe this study shows rituximab is moderating a long term immunological effect through B cells and autoantibodies, nobody has a clear sense of why it works.

D. Rituximab is expensive and has lots of side effects, including infusion reactions, renal failure, immunological disorders and possible death.


Despite the problems, there is much cheering in the Bergen study. First, something seems to work. Most clinical trials of CFS patients, like with acyclovir, show only subsets of patients who experience real improvement.

Second, this study goes a fair way to knocking off the strong belief in the medical community that CFS is "only in people's heads." Many with CFS are told that they are depressed -- they know that, but also know very well something else is going on that causes that depression.

Third, if something works, further treatment along the lines of oncology/rheumatologic trials may now get funded. Ritixumab and other monoclonal antibodies may be tried, alone or in combination.

The biggest change may occur with public acceptance and awareness. It's one thing to live with a chronic disease that controls much of your life; it's another to live with an illness many do not believe exists.

I think the Bergen study will provoke many more arguments about CFS, particularly what its main manifestations really are and what to do about it. Many sufferers will want immediate treatment with rituximab or other monoclonal antibodies, which may be clinically premature. Immunity is fiendishly complicated, and the effects of monoclonal antibodies on immunity profound. But the argument that CFS is not related to the immune system may now be less stridently asserted. That would be real progress.


"In medicina tutto quello che è sconosciuto è malattia mentale" (...)
"Una delle malattie più diffuse è la diagnosi." (Karl Kraus)

Le foto di Zac qui: PhotoZac

#2 Zac


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Inviato 20 giugno 2012 - 13:15:34

(thanks Susy)

Source: http://forums.phoeni...-present.18036/

"The Drug" - The Rituximab Story...From the Beginning to the Present....

Norwegian journalist Jorgen Jelstad has been all over the Rituximab story. His Invest in ME Conference tweets updated us on recent events, in his "How Important is Rituximab?" blog he talked with researchers about Rituximab's potential and in his recently blog, "The Drug", he published a blow-by-blow account of how Rituximab grew to such prominence in the ME/CFS universe. Thanks for allowing Phoenix Rising to publish the story..Here we give a synopsis of the story and of Jorgen's recent interview with Dr's. Mella and Fluge.
It turns out that it all began almost 10 years when Anne Katrine, a CFS patient with leukemia, walked into Dr. Fluge's office at Haukeland University in Norway….

Anne's leukemia had come back and she'd begun her second round of treatment but this time she had something interesting...even amazing to report; five weeks after starting her latest treatment regimen, the aching muscles, headaches, terrible fatigue, cognitive problems etc. she'd endured for seven long years with ME/CFS had largely disappeared. Amazingly this mostly home-bound mother had gotten so well so quickly that she'd even taken a trip to Turkey with her son.

Intrigued, Fluge said he couldn't get her out of her mind and she wouldn't let him as she prodded him to figure out what had happened. Eventually Fluge, a cancer specialist who had hardly heard of chronic fatigue syndrome, teamed up with the cancer department head, Olav Mella, and they took their shot.

The only thing different in Katrine's latest course was a drug called methotrexate, a medication that inhibits the immune response by knocking down B-cells. Fluge and Mella recruited two other patients, one of whom was a bedridden patient, Svein, who like Anne, came down with ME/CFS following a viral infection. Now in his 10th year with ME/CFS Svein had trouble carrying out even basic activities and had gotten to the point where he wondered how much longer he could go on. This time they were given Rituximab, another B-cell depleter.

Six weeks after his first Rituximab infusion Svein responded similarly, rising from his bedside to go skiing and taking hour-long walks, doing carpentry around the house and reading for the first time in years.
"After my first treatment I finished two books in a weekend. Before treatment I could not even read two pages," said Svein.
Ten weeks after the treatment he crashed and was back in bed. Another treatment roused him again - and lead to another crash. Svein couldn't be off the drug without relapsing but he was doing better and better on it. The third treatment was the best yet; like Lazarus rising suddenly from the dead, when that one kicked in Svein threw himself in heavy physical work putting putting up a new roof and walls...with no ill effects. He said
"As soon as my body functions again...I'm ready. It is like being brought back to life again"
With all three patients experiencing major improvements Fluge and Mella were convinced the treatments were touching 'a central mechanism' in the disorder. They published their results in 2009 and began a small randomized, placebo-controlled trial with 30 patients.

The results of that trial, published in Nov. 2011 were shocking; fully two-thirds of the patients significantly improved while 13% of the group that received the placebo did. The word 'significant' can be misleading with sometimes minor gains being reported as 'significant' but the improvement in this case was real with 90% of the patients reporting their improvement was 'major'. The fact that the chronic fatigue syndrome patients followed the same rebound/relapse pattern as people with autoimmune disorders did suggested that not only was the disease legit but that it be an autoimmune disorder.

The results of the study made a huge splash around the world but none were bigger than at its epicenter, Norway, where the government made an abrupt turn around and apologized for years of neglect. As Jorgen explained
It was like Rituximab was a tipping point for not longer being able to give the impression that this disease was not real, or that it was mainly a psychosomatic problem. Because how do you argue against a big gun cancer drug? In a way, Rituximab did not just heal some of the study participants, it also healed the self-respect of thousands of Norwegian ME/CFS patients who finally experienced something else than suspicion and disbelief.
Fluge/Mella Interview

Jorgen's talk with Dr's Mella and Fluge Jorgen (in the Invest In ME newsletter ) shed some more light on what's going on with the drug right now....

Fluge and Mella have been able to use 'maintenance' doses of the drug to help patients maintain major improvements for months or even a year and some clues are emerging about what the drug is doing in ME/CFS. They believe that a pattern of symptom worsening, sometimes lasting several weeks, after starting the drug could be an important sign. The fact that B-cell levels aren't correlated with remission (B-cell declines) or relapses (B-cell increases) suggests other parts of the immune system play a role as well.

A very variable 'time response' to the drug, ranging from six weeks to 8 months, however, is simply a mystery and as always, it seems with ME/CFS, the deeper a researcher digs the more convoluted the situation is. Fluge and Mella are confident in their results….the original study findings are holding up and they "feel confident that at least in a subgroup of patients the pathogenesis at some level will involve B-cells" but like others before them the disorders complexity impresses and they noted "the disease probably is even more complex than we originally thought."

Expect a few studies to show up after the summer and more as they finish up some ongoing studies.

Fluge and Mella's Studies - Five studies are underway or in the project planning stage
  • Data Capture Study - Fluge and Mella will be gathering drug to the 28 patients who fell in to the placebo-controlled group and hope to use that data to help them with funding for the 'big study"
  • Severely Ill Study - Six severely ill patients will get the drug
  • Etanercept - Fluge and Mella will give the tumor necrosis factor inhibitor Etanercept (Ebrel), another autoimmune drug, to a set of patients who didn't respond to Rituximab/
  • Pathogenesis - Fluge and Mella will dig into their now impressive biobank of samples and try to figure out just what is happening to ME/CFS patients as they get the drug.
  • The' Whopper' - Fluge and Mella have always said larger studies are needed to validate their findings and this one; 100 patients in a randomized, controlled trial (RCT) should fit the bill. They are now looking for funding.
More Rituximab

(Jorgen Jelstad is a Norwegian journalist and author of the documentary book "The Hidden Ones: and how ME came to be the most controversial disease of our time". The book is so far only available in Norwegian – named "De Bortgjemte". This article was printed in Invest in MEs conference magazine for the 2012 Invest in ME conference. )

Related posts:


"In medicina tutto quello che è sconosciuto è malattia mentale" (...)
"Una delle malattie più diffuse è la diagnosi." (Karl Kraus)

Le foto di Zac qui: PhotoZac

#3 abbonu


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Inviato 13 luglio 2013 - 19:33:14

Che ne pensate di questo RUTUXIMAB?

#4 Zac


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Inviato 07 agosto 2013 - 21:59:06

Invest in ME


    A Web Site for the
    UK Rituximab Clinical Trial for ME

    August 2013

    In order to make it easier for ME patients, ME support Groups, charities, organisations, researchers and the media to find more easily and bookmark the central point for the UK Rituximab Trial then Invest in ME have set up a special micro-site to collate all of the relevant information.


    simple to remember - UK rituximab trial.

    We hope this makes it easier for everyone and we welcome support and additions to the site as the trial begins.

    The micro-site includes the new MATRIX fundraising scheme which allows everyone to participate and support us and at the same time provides recognition.

    A facility will be added to allow questions to be posed and answered.

    Thank you to everyone who is supporting the UK rituximab trial.

    We have had support from twelve different countries already.

    Just to summarise -

        We have the facilities available
        We have the researchers available
        We have the best expertise possible available
        We have the means of fundraising for this trial available - see The MATRIX
        We have already contacted others to invite them to support our fundraising efforts and we welcome pledges for funding, even delayed until the peer review process has been achieved


    Invest in ME have contacted other organisations and welcome their pledges for financial support as well as moral support. To those organisations who are really helping us and working toward the same common goal we thank you.

    To all our supporters and the fantastic Let's Do It For ME team our thanks are eternal. We are truly humbled by the support you are giving us, by the efforts you are making and by the integrity you are showing.

    Invest in ME are coordinating this trial and the fundraising with Professor Jonathan Edwards. More news will be made available on the new web site.

    We invite everyone to participate.

    Please support us in this venture - by helping funding, by helping in fundraising or even just raising awareness of the charity's proposal.

    Thank you.



"In medicina tutto quello che è sconosciuto è malattia mentale" (...)
"Una delle malattie più diffuse è la diagnosi." (Karl Kraus)

Le foto di Zac qui: PhotoZac

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