I've long ago concluded that CFS is most likely *either* a chronic viral infection or an autoimmune disorder, or possibly a combination of both. If a treatment such as Rituximab shows benefit in properly conducted trials on a well-defined patient cohort, then it doesn't immediately matter which of the two it is - trials and possibly approved treatments can proceed based on the proven benefit while study continues into the ultimate pathology of the disease. There are quite a number of medications that are approved for various disorders where nobody knows exactly *why* they work, yet.
or immune defiency and can overlap with adrenal fatigue, chronic infections/ illness can really give the adrenals a hiding and being low in cortisol and dhea can reduce our ability to handle these stresses and disrupt sleep which then puts us in a viscious cycle.
It seems ME/CFS is more a both/and than an either/or situation...given that all patients have some combination of a varying array of pathogens, systems disruptions, and CNS weirdness. In fact, I'll add chicken/egg to both/and, because it is not clear yet either whether there is even a specific sequence of onset events across patient profiles. I like the Neuro-Immune label best, since it seems to address the totality of the illness profile; while we don't yet know whether it is immune dysregulation or an auto-immune situation, we do know that something is wrong with the immune system and the neurological system, and that multiple pathogens are at play.
I agree that auto-immune is a strong possibility, but that doesn't rule out the fact that chronic viral infection is at play--as evidenced by the vast majority of patients who have, and have had for many years, multiple identifiable persistent viruses.
Thanks for your site--it's a blessing! I've been reading here for months but this is my first post.
About five years ago I had chemotherapy as an adjunct to radiotherapy for cancer. I believe the drug was 5-fluoruracil, and I was to have it in two sessions of a week each, one near the start and the other near the end of the radiation treatements.
In my first and only interview with the chemotherapist, I told him that although I was concerned about getting through the demands of more than two months of radiotherapy/chemo, I just had a feeling I would be OK. His response gave me the impression that it was common knowledge in his field that CFS people often/may do well on chemo--"You'll feel terrific for the first month, then you'll start to feel tired again as the effects of the radiation kick in."
Actually, what happened was that the post-exertional malaise improved by at last 50% during or after the first week of chemo (I forget which) and it stayed improved all through the treatment and the recovery phase at home until just before I got my first "nearly normal" blood test results. I DID get "tired" from the radiotherapy but it was a normal, minor fatigue that went away after a rest. Apart from the pain from the radiotherapy burns towards the end and the mild nausea during the chemotherapy itself I felt FANTASTIC during those three or four months until my immune system "recovered" to previous CFS levels.
After those amazing months, I believe the CFS might have become worse than before the treatement, in the sense that I was able to do less before a fatigue reaction set in, or, in other words, I got a worse reaction than before to a given task, my "energy envelope" had shrunk. So I would think at least twice before taking chemo again, for either CFS or cancer.
The double-blinded, placebo controlled study of Rituximab is completed, the paper written and has been sent to a journal for publication (no word on its fate). The study was apparently successfu as he states
'we are presenting strong indications of the mechanism behind this poorly understood entity to be autoimmune).
The next study (NCT01156909) of Rituximab intervention and maintenance in 25 patients (giving the drug up to 14 months) is underway. This study has 3 years of follow-up, but they will be try to publish an initial analysis after one year.
Thanks for the update, Cort. I hope it is published soon. If I remember correctly, the authors of the first Rituxan study hypothesized that the good results for pwme was either due to an autoimmune condition or an infection of the B cells themselves. Sounds like they are leaning to the autoimmune theory.
Autoimmunity, in my mind, is difficult to understand. There is often an infectious start to autoimmune conditions. So, is the body attacking "self" or is there some stealth pathogen that we are unable to detect that causes what we call "autoimmune?"