‘CFS – a treatable autoimmune disease’, Huffington Post Online, 26 October 2011

October 26, 2011

From Huffington Post Online, AOL Health News, 26 October 2011 (words by Dr Matthew Edlund MD).

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.

4 thoughts on “‘CFS – a treatable autoimmune disease’, Huffington Post Online, 26 October 2011”

  1. Goodness me… unbiased reporting?… in the UK?… and by a doctor?!… wonders will never cease!

    Kudos to you Dr Matthew Edlund & thanks…..
    Can you start writing for one of the broadsheets please…

    1. Actually if you look at this section it is uninformed.

      “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.”

      The assays used in the paper were again optimised to VP62. The viruses found by Lombardi et al. can no longer be said to be VP62/XMRV, even if it was a ridiculous idea to state that the retroviruses infecting people could be one strain of HGRVs. Consider, where would we be if that had been done with HIV-1.

      Optimising to a clone also does not provide any data on diagnostic sensitivity and these viruses integrate into regions with high CG content, which a clone cannot imitate as they do not integrate into spiked samples. Critics and scientists have been criticising all the negative papers over this for a while now.

      So this paper is irrelevant to HGRVs science, but it does support the HGRVs hypothesis as MLV viruses infect B cells.

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