Due to decades of ignorance as to the causative organism, there is a strong tendency for patients to identify with symptom groups. My first friend to be felled by CFS visited me for a month in early ’97. I already knew that I was ill, but didn’t recognize that we had the same disease because we fall into different symptom subsets. In the end, the association between X and CFS will be irrelevant. If you are X+ you will be able to go to an ID doc and he or she won’t glaze over when listening to your history. They will ask you how you are doing on your drugs and measure your viral load.
In my opinion, the sickest patients have a right to try the drugs. There is a coherent rationale for a new approach to treatment of a horrible debilitating disease with existing, safe drugs.
It is unbelievable to me that clinical trials have not yet begun, ten months after the Science paper was published. It is completely outrageous that it is business as usual with a few twists in the scientific and medical worlds. New people, new babies, are being infected every day with an incurable retrovirus like HIV. The blood supply is contaminated. We have no idea how it’s transmitted. This one may be easier to vaccinate against than HIV has proven to be, but nobody has even begun to work on it.
With HIV, patients waited years for drugs and viral load measures. We have a road map this time. The science has lagged so far behind that there are millions of people with very advanced disease. It is an emergency.
The doctors aren’t doing any more for the patients than the scientific world has. There are over a thousand people out there with positive cultures. Many of them want to be treated. It is perfectly legal to prescribe drugs off-label and the doctors caring for these patients have been prescribing them more dangerous drugs than these for decades. But the absence of a replicative study has made most doctors unwilling to consider treatment with antiretrovirals. Patients have written to me that they can’t even get their doctors to order a test!
The scientists with whom I correspond believe that it is safer if patients wait until the science runs it’s course. They believe that there is an orderly sequence that needs to happen before anyone rushes for treatment. I am obviously an early adopter and it is true that in the case of treatment for chronic Lyme, I bought into the ILADS hypothesis, so buyer beware. I am reporting here, including my mistakes, in the hope that others will have more clarity than I did with respect to the use of antibiotics in this patient population. When we were diagnosed with Lyme nothing fit, but there were intelligent, well intentioned doctors offering what sounded like meaningful treatment. And it worked for my daughter for several years, so there is value in properly used antibiotics, but it needs to be tempered with what we now “know”. It’s only with time that the truth is finally being revealed. This time there is considerable clarity, if one allows the skipping of a few admittedly very important steps in the scientific process. But let’s look at what we’ve got to work with.
There are many commonalities with HIV disease: sensory and autonomic neuropathy, dementia, opportunistic infections, susceptibility to certain cancers, metabolic problems involving vitamin D, detox problems, abnormalities of glucose metabolism, vertical transmission.
It is worth noting here that the “fatigue” is not seen clinically in HIV disease in patients treated with HAART. It is therefore tempting to speculate, that XMRV is being inhibited by treatment as well, since there must be patients who have both. Epidemiologic studies should be very illuminating.
Commonalities between CFS and ASD: sensory disturbances, cognitive issues, IBS, mitochondrial defect, detox problems, opportunistic infections, susceptibility to vaccine inury.
GWS: Very similar picture to CFS, inluding high prevalence of PTSD in the patient population. Similar stress response is particularly noteworthy.
XMRV is an exogenous human retrovirus. All the other known human exogenous retroviruses cause disease in humans. XMRV is a gammaretrovirus. Other examples of the same genus are the MLV’s and FeLV. MLV’s cause a variety of diseases including cancer and neurodegenerative diseases in mice. FeLV causes disease in cats not unlike CFS in humans, fatigue, adenopathy, GI disturbance, neuropathies, abnormalities of serum osmolarity.
Here are a few little loose dots, but ones I find particularly tantalizing because they reflect on the neuropsychiatric piece. Some autistic children have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) in which they have difficulty clearing the organism and OCD symptoms are prominent. Avian leukemia virus is an alpharetrovirus. Parrots in captivity get a form of trichotillomania, aptly called feather-picking, that responds to Prozac. Trichotillomania is a form of OCD. Here is an article suggesting that compulsive behavior can be transplanted from one mouse to another. link Lab mice lack the XPR1 receptor (required for XMLV and XMRV entry into cells) and are therefore resistant to the xenotropic strains of MLV, but have ERV’s. There is evidence that endogenous retroviruses which have been thought not to cause disease, probably do sometimes. And a fascinating presentation suggesting ERV involvement in schizophrenia. link
It seems to me from my email that there is a peak in the patient population around age 55 or 56 in both the CFS and Lyme groups, regardless of when they first became ill. Perhaps a bell curve? I suppose it could be chance, but it seems too frequent to me for chance. It suggests to me that there was a horizontal transmission event, like a vaccine that went out in the mid or late 1950’s. And this sobering paper. link There also seems to be an increased incidence of other likely X related neuroimmune diseases, particularly ASD and MS, in family members of CFS patients. Any epidemiologists out there want to take on these important questions? Sure doesn’t seem like we can count on the CDC to help us.