Friday, December 31, 2010


You know the body-sniffing dogs that search for survivors in the rubble after buildings collapse? You know how the dogs’ handlers hide healthy people in the rubble to prevent the dogs from becoming too discouraged when the dead-body count starts piling up like so many sacks of potatoes?  That’s along the lines of how things have been going ME/CFS, with a bit of bright news followed by crashing blows for patients, who carry on much like their canine counterparts. The fallout can be worse than the original event.

In the U.K., for example, the NICE [National Institute of Health and Clinical Excellence] Guidelines issued in 2007 signaled to patients that they’d have a tough time finding physicians to treat them with more than antidepressants and cognitive therapy.  But the NICE guidelines also put the kibosh on pharmaceutical research into a promising ME/CFS antiviral drug, Isoprinosine.

A 2010 Newport Pharmaceuticals Limited email obtained by CFS Central stated that the company ceased drug trials of Isoprinosine not because the drug was not effective—a preliminary study on ME/CFS patients indicated that it was efficacious—but solely because of the NICE Guidelines, which, stated the memo, “advocated non pharmaceutical intervention for the treatment of the condition.”

Isoprinosine has proved helpful for some patients with ME/CFS. Several physicians have treated ME/CFS patients with  Isoprinosine, including Dr. Nancy Klimas in the U.S.  It’s believed the drug works as an immunomodulator, by shifting humoral (antibody) Th2 dominance into cell-mediated Th1 dominance, which rallies macrophages, natural-killer cells and cytotoxic T-cells.  Natural killer cell function is usually depressed in ME/CFS patients. In studies, the drug has been show to prevent HIV patients from developing AIDS, and has also been used to treat cancer.  It’s approved in Europe and Canada to treat viral infections. Once a drug is approved for a specific disease, it lends legitimacy to that disease.    

CFS Central queried Newport Pharmaceuticals with a list of questions:
  • Why did Newport Pharmaceuticals decide to investigate Isoprinosine to treat ME/CFS?
  • The company conducted a Phase II trial in Canada in 2003: “Clinical improvement in chronic fatigue syndrome is associated with enhanced natural killer cell-mediated cytotoxicity: The results of a pilot study with Isoprinosine.” Did Newport Pharmaceuticals conduct any other Isoprinosine drug trials with ME/CFS patients? If so, I’d be interested in reading those studies and knowing the results.
  • The ME/CFS Isoprinosine research stopped due to the NICE guidelines, which advocates using only antidepressants, GET [Graduated Exercise Therapy] and CBT [Cognitive Behavioral Therapy] to treat ME/CFS patients. What year did Newport terminate the ME/CFS research into Isoprinosine?
  • Would you explain why your company decided to stop the research because of these guidelines?  After all, treatment guidelines change over time, and research into new drugs is one of the ways that they do.
  • If the drug wouldn’t work for the U.K. market due to the NICE guidelines, why not for the American market, the Canadian market, or those of other countries?
  • Are there any plans to investigate whether Isoprinosine inhibits the retrovirus XMRV in patients with ME/CFS or prostate cancer?  As you may know, the newly discovered retrovirus has been found in patients with both diseases.  
The company declined comment.

Research guidelines and treatment guidelines are two different things—or should be:  Today’s experimental treatments often morph into tomorrow’s standard of care. ME/CFS patients can't get effective drug treatments until the research is done.  But the research isn't being done because the government in Great Britain appears all too willing to sweep ME/CFS under the proverbial rug, and at least one pharmaceutical company seems willing to follow.  


  1. Imunovir is available in Canada under prescription. I am Canadian. Nancy K recommended me to take imunovir for my low NK cells. However no canadian doctor wants to prescribe it to me. Apparently it is non- formulary. And on the Rivex website, they say that it hasn't been approved for CFS.

    Thank you for trying Newport Pharmaceuticals Mindy, I think they have a reason why they are staying silent.

    Interesting times.

  2. Thanks for asking the good questions, Mindy, and keeping track of their malfeasance. Wishing you the best in 2011!


  3. Good questions. My personal experience with isoprinosine was bad. I took it for several months, following Cheney's "pulsing" protocol. It set me back badly. I stopped after two months and it took months to get back to normally abnormal. Like most every treatment, so far, for ME/CFS, we all respond differently. I have heard anecdotely that it helps some so agree that there's no excuse for not pursuing research.


  4. I have been informed that Dr dusty Miller plans to use the controversial IAP assay in his forthcoming study to test for mouse contamination instead of the established and much more specific assay for mouse mitochondrial DNA.I am not in a position to confirm that this is true

    My concern lies on his plan to use IAP to detect mouse contamination. This is claimed to only amplify mouse DNA by Coffin


    these sequences are found on activated T cells



  5. Isoprinosine affects serum cytokine levels in healthy adults.

    Petrova M, Jelev D, Ivanova A, Krastev Z.

    Medical Institute Ministry of Interior, Sofia, Bulgaria.

    Isoprinosine is a synthetic purine derivative with immunomodulatory and antiviral properties, which result from an apparent in vivo enhancement of host immune responses. To evaluate the serum levels of certain cytokines during and after isoprinosine treatment, we assigned 10 healthy volunteers to receive isoprinosine 1 g, 3 times daily, 5 consecutive days weekly. Both treatment and follow-up phase last 3 weeks. Interferon-gamma (IFN-gamma), interleukin-2 (IL-2), IL-10, and tumor necrosis factor-alpha (TNF-alpha) were measured in serum using commercial ELISA kits at baseline, 7th, 10th, 14th, 21st, 28th, 35th, and 42nd day. We observed an increase in serum levels of all measured cytokines at 7th to 10th day.

    simply put this drug could cause any latent virus to reactivate and any replicating retrovirus to replicate at an increased rate

  6. re gerwyns comments on isoprinosine...what I dont understand is that there HAVE been some studies done where CFS patients DID improve and verious cell functions did improve, so it did seem to be helping some people, secondly people like Dr Klimas and even some docs in the uk have used and do use isoprinosine and it does seem to help my query to gerwyn is, why are you saying that it could make people worse? are you saying there may be a subset? are you saying its a case of try it and see if you are a responder...because if it DOES help some people then surely it would be a shame to miss out

  7. I briefly saw Cheney a few years ago and he said that inosine, which one can get at most vitamin stores, acts the same and rec'd patients try it. I didnt like how I felt on it and stopped without a long trial and from time to time tried it but just didn't feel right to hang in there on it. I tend to be upregulated immune so maybe it works better for people in a phase or type of cfs where they are downregulated?

  8. Hi jimbob

    the trouble is that CFS is not an objective diagnosis but a political construct created by the CDC. A lot of studies I see which purport to display the cytokine profiles of PWME are more consistent with Epstein Barr virus than a retroviral infection( eg Broderick et al 2010). Epstein barr can be reactivated by a retrovirus infection and some people erroneously label people with persistent Epstein barr infection as having EBV. Stress can both reactivate EBV and cause fatigue as indeed can a number of organic illnesse. thus it is likely that those who do benefit have a herpesvirus causing at least some of their pathology. The danger is that if a retrovirus is the ultimate cause of ebv reactivation then giving this drug could be a disaster Anyone who has a HGRV infection would be playing russian roulette!

    Isoprinosine in the treatment of herpes virus infections in children with leukaemia and malignant lymphoma.

    Ochocka M, Chmielewska D, Matysiak M.

    Isoprinosine was given to 15 children with lymphoblastic diseases and 3 adults during infections with herpes viruses - herpes simplex (HSV) and varicella-zoster viruses (VZV). The control group included 7 children who had previously suffered from infections with HSV and VZV without being treated with isoprinosine. The clinical observations showed a significant inhibitory effect of isoprinosine on viral infections, with the duration of the disease being shortened considerably. The authors think isoprinosine treatment to be justified in viral infections, especially in children with neoplastic diseases, because of the immunostimulating action of the drug, rapid clinical improvement and good tolerance of the drug.

  9. Inosine definitely improved my cognitive ability although I had to take it at a lower dose than Dr. Cheney has most of his patients on. I have tested positive for XMRV.

  10. Isoprinosine is available (as Imunovir) by Rx in New Zealand. Fortunately we have someone to prescribe it.
    It has helped me in terms of making the crashes of shorter duration.
    I know of one person here whom it helped a great deal and one whom it did not help.
    In terms of infection, those test are not available to us here. It is possible that those who improved do have herpes infections, but no way to tell at this point.
    NICE is not.

  11. Everyone's immune system is different, with different cytokine profiles, for starters, which is why some respond favorably to the drug, and others unfavorably. If Newport's research had continued, perhaps the company would have figured out who benefits from the drug and who gets worse on it.

    That, in turn, would shed light on the disease process and on other already approved drugs that might help ME/CFS patients--both for the patients who responded to Isoprinosine and those who didn't, as well as encourage more drug development.

  12. I think the UK are hoping we all drop dead one by one to be honest , then we wont be a problem anymore will we .

    Why are the rest of the world taking notice of a tiny island called Britain who doesnt give a toss about folk with ME/CFS .Surely one tiny island cannot have so much power . Time for the rest of the world to turn round and tell the UK they are wrong . Patients think its bad in other countries , well whats happening in the UK a so called fair , free , civilised society is tantamount to genocide . But the thing is nobody notices because we die slowly from this , and whilst we are alive many of us who are homebound or bedbound are out of sight out of mind . No wonder they get away with labelling us all as nuts , cause unless you know someone personally with this illness you never get to see the sheer gravity of how devastating this illness can be .

    If I could leave Britain tomorrow I would , there is nothing Great in Great Britain and if other countries start to follow their lead its god help everyone with this illness . If other countries start using the NICE guidlines , well to be honest it doesnt bare thinking about .We really do need all the help we can get here in the UK I really cannot stress that enough. We really do appreciate everyone who is trying to help our situation . thankyou

  13. I agree that the UK seems to have influence over the US out of all proportion in matters relating to ME. Why is that? We really need to know why is that?!

  14. I always enjoy your investigative reporting and articles mindy! When the US uncovers the physical cause of ME/CFS, the UK will be charged with the genocide of PWME...tick tock, tick tock. remember Sophia Mirza

  15. This sounds very heavy handed, why does a research oversight committee (MRC)want to be blinded. If Immunovir is not useful, do the research and show it to be ineffective, contra-effective, or effective.
    I have tried Immunovir, for me it did not help, but for other patients of Dr Enlander I believe it was helpful. In my case I found greater help from Immunoprop/ Immunoplus (

  16. "The UK and Scottish governments have come under fire over their handling of the swine flu outbreak from experts who warn it may now be too late for those most at risk to gain the maximum benefit from vaccination. ... The total in intensive care is now four times higher than the peak during last winter's outbreak ... " ( )
    It astonished me last year when the UK government first announced they wouldn't vaccinate anyone for swine flu. Fortunately, they changed their course of action. Unfortunately, however, this year, too little, too late, it seems.

  17. Thanks Mindy for this. Please investigate this more as a pharma drug is key to the disease.

    It is based in Co Dublin, Ireland.

  18. -I think part of the solution is to prosecute crimes against humanity in the visible heads that have obscured the severity of this condition. As the evidence is amply demonstrated, and there are numerous witnesses and evidence ,..., and millions of victims (many now deceased, and others by falling or contaminated) by the delay in investigations, these enemies of humanity must be duly punished.

    If you can inject XMRV a monkey, then these primates unsympathetic, greedy and merciless that have profited and withheld information regardless of the suffering of millions of people, must be the missing link between macaques and humans for progress of research.

    Its entities are to be used for all types of drug testing next generation by the WPI and related laboratories. In case of death must be donated to science for the complete dissection of their bodies in order to find more evidence.

    Unlike them and as a compassionate, I suggest that aside from the good treatment accorded them in secure laboratories, be assigned a professional psychologist take many years to frentre of an association of patients with FM / CFS / MCS, or autism or various types of cancer, and will have opportunity to have contact with mercy, while serving in something useful to the community.

    Someone may be shocked at discharge in these lines, but I urge you to think in terms of proportionality, the balance is tilted sobradamerte. Of us, citizens, to ensure that these instruments be used as little as possible.

    If anyone doubts that this is an unequal war without quarter and without honor codes, the reality will finish prostrating to that evidence.

  19. Oh, I see what you mean (.. my cognition is not great with this flu). It's the bad guidelines from NICE that are a problem.

    They advocate NON-pharmaceutical interventions for the treatment of ME/CFS. I imagine these interventions are paid by the patients themselves, and not by the Health Care sytem.

    The World Health Organization Global Alert says the UK reported an increase in severe cases of H1N1 back on Dec. 15 ( ).

    The UK health agency has known it for over three weeks, and so there should have been no lapse in switching to the H1N1 vaccine stockpiles from yesteryear. Instead, they just started it this past Thursday. Now, the regular vaccine includes H1N1 most likely, but I heard they ran out in locations and people were complaining about not knowing about it.

    Do the NICE guidelines block the use of antivirals for H1N1 influenza in ME/CFS patients? The WHO webpage above recommends early treatment with antivirals for high risk people suspected with influenza. No laboratory confirmation is required. I hope that includes ME/CFS patients in the UK.

    Yes, those guidelines ought to change to allow pharmaceutical research into ME/CFS. It might cost a lot to treat ME/CFS with pharmaceuticals. I bet the UK scientists could come up with some great research if they were allowed to.

    Thanks for the awareness of the not so NICE guidelines you've given us. They have a throttlehold about the necks of ME/CFS patients, it seems.

  20. if it turned out that the above pharma company had a treatment for cfs and is not going to release this drug to the sick because of the idiot fools nice guidlines i personaly would hyjack their trucks...i would even call them and tell them i was on my way to steal their trucks and they would continue to loose their trucks until everyone was treated like human good b's, in the mean time everybody spread the word on GcMAF and hopefully we can put all the scums completely out of business...pharma industry is a dying entity that will not be needed soon when the full truth gets out... sincerely aidan walsh southampton, u.k.

  21. Thanks once again Mindy for your excellent reporting!

    Governments' posture on ME has long squelched drug development. In the US Stephen Straus made sure Chiron pharma abandoned its work on the DeFreitas retrovirus with his usual weapon: straight up lying about the science. It's disgusting we are denied treatment because the US and UK govts don't want to pay.

  22. I am trying out Imunovir now, and have noticed a significant improvement in only 3 weeks. I've tested positive for MLV-related viruses (RedLabs), and some of the comments above here scared me a bit - I don't want Imunovir to increase replication of the virus of course.

    I don't have a good explanation to why I'm feeling so much better now (energy levels, less muscle fatigue, less swollen lymph nodes and more), but I'll keep taking it for a while to see what happens unless I see compelling evidence not to.

    If anyone wants to share experiences, please find my contact details at


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