An NCF Column for Inquiring Patients
By Alan Cocchetto
Copyright 2013

From Winter 2013-2014 Forum

The “Just Ask” column is intended to act as a means for patients to inquire about issues related to the NCF’s research activities. This column is NOT intended to act as medical advice in any way, shape or form! The National CFIDS Foundation assumes no responsibilities for any action or treatment undertaken by readers. For medical advice, please consult your own personal healthcare providers.

This column is dedicated to the memory of Tom Hennessy. Tom passed away on September 9, 2013. As many of you know, Tom founded RESCIND, an advocacy organization for CFIDS patients.

Tom and I first crossed paths back in the early 90's. By the late 90's, Tom read my testimony before the federal CFSAC committee. At that time, I had prepared a brief multipage document outlining the Department of Health and Human Services (DHHS) own scientific discoveries directed toward CFIDS. I had done this by identifying appropriate CFIDS based U.S. patents that DHHS scientists had filed. Tom told me that the disclosure of this information was something that hadn't been discussed before. Even he was surprised that the patent literature had secrets to reveal.

I remember Tom telling me afterwards that once he started reading these patent briefs, Dr. David Satcher, the U.S. Surgeon General who attended this meeting, looked my document over then abruptly got up from his chair and left the meeting! Tom looked at this as a success and so did I.

Like so many others before him, Tom was a long-term CFIDS patient who went through hell with this disease. I just wish to say thank you Tom for all your kind efforts to help others. I hope and pray that you are now at peace.

Q: Dear NCF, I read somewhere that doctors were using Rituximab for treating CFIDS. What do you guys think?

A: Rituximab (Rituxan) is a monoclonal antibody against the protein CD20, which is found on the surface of immune system B-cells. Since Rituximab destroys B-cells, it is used to treat diseases which are characterized by excessive numbers of B-cells, overactive B-cells, or dysfunctional B-cells. This includes many lymphomas, leukemias, transplant rejection and autoimmune disorders.

The NCF does not currently recommend the use of Rituximab for CFIDS patients for several basic reasons. First, the NCF's cohort of patients test positive for internal radionuclides. Therefore, disease progression is a function of both the dose, duration and type of radionuclide involved. Rituximab has never been applied as a treatment for low-level internalized ionizing radiation exposure. For example, does the use of Rituximab cause more chromosomal damage in these patients? Thus, knowing the source of the problem can help to identify the most helpful drug treatments. Next, normal B-cells circulate at a given level in the blood. Dr. Paul Cheney and Dr. Dan Peterson observed complete depletion of their CFIDS patients B-cells as reported in Hillary Johnson's book, Osler's Web. If the disease process itself is causing B-cell depletion, then why would you want to apply a drug that acts to deplete B-cells also? Thus, for patients who are experiencing B-cell depletion, the NCF believes that the use of Rituximab may accelerate the disease process and therefore would be contraindicated. Lastly, no one knows the long-term effects of Rituximab on these patients and as such, patients need to carefully weigh the risk-to-reward ratio for the use of this drug. The NCF strongly recommends that patients discuss both the potential benefits as well as the potential risks associated with the use of Rituximab with their physicians.

References:

1. Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series; Fluge O, Mella O; BMC Neurol. 2009 Jul 1;9:28. doi: 10.1186/1471-2377-9-28

2. Benefit from B-lymphocyte depletion using the anti-CD20 antibody rituximab in chronic fatigue syndrome. A double-blind and placebo-controlled study; Fluge Ø, Bruland O, Risa K, Storstein A, Kristoffersen EK, Sapkota D, Næss H, Dahl O, Nyland H, Mella O; PLoS One. 2011;6(10):e26358. doi: 10.1371/journal.pone.0026358. Epub 2011 Oct 19.