Connecting the dots

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.

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11 thoughts on “Connecting the dots

  1. >Are you aware of any data on a connection with the XMRV retrovirus and fibromyalgia? I remember reading in the Whittemore-Peterson study results that they also tested a small group of fm patients and found the virus in most of them. However, I have not heard anything relating XMRV and fm anywhere else. Thanks.

  2. >Wow I fit into that 55-56 age group and have often wondered what they did to me in the 1950s, so many my age have cancer or autoimmune disease, 10 out the 30 in my nursing school class are dead, several have autoimmune disease or cancer, there has to be a cause!

  3. >Jamie, thank you for saying it out loud.

    Your story needs to be told, and is being read by fellow patients but also other physicians, scientists and journalists.

    Your voice is important. And in some ways, your voice becomes other patients' voices.

    Keep on writing!

  4. >I have done some fairly extensive reading on what was going on with polio vaccine and it is very sobering. It was created using monkey kidneys that contaminated all of the early vaccine as well as much of the later vaccine (even up to present day, according to some sources which I am less sure about)with Simian Virus 40, hugely carcinogenic. I remember reading an author that then correlated the rise of soft-tissue cancers from then until now. If you consider how many people were inoculated with a cancer causing virus it's staggering.

    I am also 55 and I remember all the remarks and mystery about the rise of cancer as I grew up. The truly horrifying thing is that the vaccine went into use knowingly contaminated.

    I can't cite my sources at the moment (bad brain day) but I will on a better day, if anyone is interested.

  5. >Great article, thanks very much! I'd just like to respond to your reference that 'It is perfectly legal to prescribe drugs off-label'. Here in Australia, the issue is not just that Dr's are reluctant to do so but that the drugs are extremely expensive. If you have HIV the government subsidise the drugs and they are very affordable but if you don't have HIV then there is no way the average person who is to sick to work could pay for them. I am struggling just to buy food!!! I'd love to be able to give the drugs a go :)

  6. >Hello from Belgium. This is a very interesting blog post. I am asking myself the same questions since a long time…thank you for putting these dots together!

    This might also interest you, on Virology blog today: "Are you an ERVous wreck?"
    I particularly appreciated your link to the schizofrenia presentation, I had not seen this before.
    I will follow your blog, and hope to read more good news on your retroviral therapy.

  7. >The fact that your daughter was helped by long-term antibiotics makes me think that CFS is perhaps initiated by XMRV, but progresses as other organisms that are normally suppressed gain a foothold.

    Lyme is one candidate; CPn (CPnHelp) is another. All the candidates other than XMRV are fairly common in the non-CFS population. CFS patients will typically show elevated titers to organisms that other people keep suppressed.

    Still, if XMRV is similar to HIV in allowing normally suppressed organisms to spread, then antibiotic therapy for those other organisms might be an necessary part of the clean-up from XMRV, even when it's dead.

  8. >Here's another 55-year old! And my best friend from high school (same age) also has ME/CFS, and another from our class just got prostate cancer. I don't have details of anyone else – but we all grew up in the north of England, and I wonder if the event you're thinking of would have occurred there too.
    Many thanks for continuing to write about this.

  9. >Thank you for this great post! You are invaluable as one of the few MDs who tells it straight about the whole sordid mess and the ways forward from here. Please keep it up!

    – Justin Reilly

  10. >it could also be that your patients/readers may fall more heavily into later middle-age :) groups because the average time-to-diagnosis for FMS and related disorders is 5-15 years, or because there was a time at which it was rarely diagnosed at all (unless you count "my rheumatism is acting up!"). heck, it could correspond to a well-received conference or paper or journal article.

    it was 9 years for me (i am 43), unless you count that i don't truly have a diagnosis yet, beyond "joint hypermobility" [excluding marfan's] and adhd.

    thank you for your blog; it is great!

  11. >There is research showing that mice get Crohns if, and only if all of these came together and in the right order:
    – one particular gene
    – one particular norovirus
    – then an infection
    An infection before the virus or a different norovirus did not give Crohns.

    Can this explain our different symptoms, why many have the virus without being ill etc?


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