Saturday, May 29, 2010

The Flashpoint

The past few weeks were a watershed in the convergence of very positive events in the search for validity in CFS/ME research and treatment. These events include the recent Invest in ME conference in London, the groundbreaking and thrilling published study of Dr. A. Martin Lerner and the recent XMRV tour of various European cities of the CFS/ME lions, de Meirleir and Peterson. These are heady times.

With the announcement on October 9, 2009 the world of CFS/ME changed. Suddenly there was a substantial piece of research with far- reaching implications. It was immediately obvious that this study was going to cause consternation. The discovery had the capacity to short circuit a dysfunctional system and shake things up. It was equally obvious that a door was opened. Whether it would stay open or be opened further or slammed shut was not clear; and it is still not clear. However the opportunity to move forward in CFS/ME research is there, and many people in the CFS/ME world sense it. Some are hopelessly optimistic, other are more restrained. Still others, the real losers, want to wait and see. What are they waiting for?

There is a discernible momentum and various people are tuned into it. A more accurate XMRV test will be coming out in a few weeks. This will unleash a host of doctors who are waiting to test their patients. This will be the ultimate “large-scale” trial. This antibody test has the possibility to show a significant percentage of positive results in CFS/ME - as well as in other diseases. The deficiencies of this test will be augmented by other forms of testing – stomach biopsies, saliva tests - to find additional reservoirs where the virus hides.

De Meirleir, Peterson, Cheney, Montoya, Brewer and perhaps others are acting as if there is going to be a “next stage”. That next stage will involve “immune tracking” (as yet undefined, but the subject of great attention by a few) and treatment possibilities. At this point we do not know what the treatments will be, but we can guess: AZT, Raltegravir, Apricitabine, tenofovir, peptide T, GcMAF, and Ampligen are all mentioned, as well as various immune modulators, particularly a stage-three trial drug being developed in Canada. Treatment protocols will take time, but this will start very shortly (if they have not started already). You can bet the farm on that.

In the short run, treatment will be the best chance to determine causality. In this manner we will find out the part that XMRV plays.

It is remarkable what has happened recently amongst CFS/ME practitioners. Dr. Lerner has released his incredible study results on antiviral treatments. This is a long tracking of all of his patients over the past ten years. His treatment results are very positive. What a sublime effort; this man is a real hero – and modest too. It seems likely that he will test his patients for XMRV and incorporate those results eventually into his treatment protocol. Perhaps, as promised two years ago, he will make a treatment DVD for other doctors.

It is a known fact that Dr. Lerner consults or interacts with Dr. Montoya about treatment protocols. This has been happening for some time. Dr. Montoya ran into a seeming dead-end regarding his Valcyte trial but he has not lost interest. Montoya has modulated his dosage regimens with Valcyte and added other drugs. Presumably these two are pooling information. Dr. Montoya will soon be using this new XMRV test. Dr. Montoya consults with Dr. Brewer, who has expertise in both CFS and AIDS. Brewer is practiced in giving antiretroviral drug regimens to AIDS patients. Montoya has colleagues at Stanford who can give him help with retrovirals. Dr. Montoya also consults with Dr. Enlander who also talks with Dr. de Meirleir. We know that de Meirleir consults with Cheney on a regular basis, perhaps every day. Cheney is seen talking to people at the WPI on a webcast and in London.

Dr. Cheney has developed over the years his own exquisite protocol. While Cheney eschews antivirals, he has his own equivalent involving Artusenate and cell signaling factors. He claims now to be able to blunt diastolic dysfunction in many patients. Perhaps de Meirleir will start using Artusenate? I think so. Cheney also uses cell signaling factors and is working on an even more potentially effective one involving human afterbirth material. This material might short-circuit the need for stem cell infusions. This man’s curious mind is always on the go, reading, thinking, problem solving. The big question with Cheney is whether his ideas can be extended to others.

De Meirleir and Peterson are traveling through Europe this month doing conferences on XMRV. They travel to Spain and Norway. Peterson has a continuing strong relation with WPI since retiring from the WPI directorship. Where Dr. Chia fits into this picture, I do not know. More efforts must be made to bring Dr. Chia into these discussions. He has such good ideas and so much fine data. Perhaps when the new test comes out, he will find a connection. I mention Dr. Chia to every CFS/ME person that I talk to.

There is a thread here. There is huge interaction among a certain cadre of researchers and doctors. This has never happened before with this disease.

While things have been building for years (Lerner’s study covers ten or more years, Chia’s work covers a long time, and the same with the others.) the XMRV study tripped a switch. What exactly it will lead to we do not know. However, despite individual differences, a consensus is forming.

As things move forward differences of points of view are to be expected. After all there is a great deal of unknowns about this virus and its attachment, if any, with disease. If we were able to overhear Dr. Brewer we might discern that he believes this XMRV is the cause of CFS/ME. If we were a fly on the wall in Peterson’s office he might say that the percentages of XMRV expressed today are too high. Klimas might urge patience and wait for more information. Who is going to supply this? It is entirely possible to see de Meirleir, with his slight smile, say, “XMRV is not the only thing here”. What might that mean? Far from being a rejection of XMRV, it anticipates further discoveries. This reinforces Judy Mikovits’ statement that there might be an XMRV-2. So hold onto your hats, this is going to be interesting.

What is not interesting is the attempt by some, for unknown reasons, to take out the flashpoint of this new science and XMRV. The first effort on the part of nay-sayers is to try to dry up the funding of the WPI. Instead of a great deal of cash flowing to this institute to speed up research, hire new lab assistants, help meet an operating budget need of a couple of million dollars, none of this has happened. The attempt to blunt the cash flow to XMRV-related matters and CFS/ME has been successful and no great additional funding has come their way.

Hence Dr. Bell’s plea for patients’ grassroots contributions to the WPI. This was a desperate plea, appealing to the very sick who can barely take care of themselves, who can’t work, can’t move, are often abandoned and live on their own limited resources. These are the folks who are going to save the WPI? But Dr. Bell sees the writing on the wall, he sees the success of cutting off CFS/ME research funding. It is a time-proven tactic on the part of the scientific establishment. Check out how Denise Faustman is frozen out in diabetes research and her funding seriously restricted - while her ideas are “appropriated’ by others. This is always a neat trick. Read about how Judah Folkman was denied funding for many years with his angiogenesis work. There are many such stories. So Dr. Bell’s concerns are well placed and take on a heightened meaning in the current situation.

Like it or not, the WPI is our flashpoint, it is the flashpoint of CFS/ME research in the future. If they are degraded, if they are defeated, we all lose. It is as simple as that.

It is important to remember that this WP Institute is a very small entity. It has one science director/researcher, one researcher and one lab assistant. At the moment it has a makeshift lab. The science director is on the road most of the time advocating for and defending her research. In addition there is a medical director, at the moment an unfilled position, and a Director of the Institute itself. The word institute implies perhaps a large edifice, something with great resources, unlimited resources, vast amounts of people. The truth is that in is a very small organization of a few dedicated researchers and a limited budget. (The small college that I taught at has seven or eight full time biologists or microbiologists, not to mention many chemists and other scientific minds, and a healthy amount of outside funding, generally wasted on insignificant academic projects.) It is astonishing how small this WPI really is – and how vulnerable.

In this battle there are no rules. The idealist utopian idea that science is pure is bullshit. This is not a clean and measured fight. Science is a competitive and dirty business, with very large stakes. People, even friends or compatriots, steal each others ideas at the first opportunity. Egos are very large and impossible to control. Those who believe the cream will naturally rise to the top in science are wrong. Those who believe the state or federal government will recognize the validity of certain research and support it are wrong. Those who think “friendly” or allied organizations will come to the rescue and be supportive are wrong. Pure science has to move forward in a force field of stiff resistance. The pressures against research in CFS/ME, for varied and unknown reasons, are immense. The WPI has gotten where it is with private funding and that will have to continue.

The disease of CFS/ME has two very serious problems - beyond the obvious. The first is that CFS/ME patients are so ill that they cannot move - or focus. Thus they cannot organize or lobby for themselves (as AIDS patients). The second is what I call the “Disbelief Factor”. No one believes this disease. No one believes it. It is beyond understanding. Often the patients themselves do not believe it - with its manifold symptoms and episodic debilitating nature. Hence they often get worse, because they cannot believe they have what they have. Family members, even close family members, don’t believe it. Friends don’t believe it. Doctors don’t believe it. Even those who are around it all the time, like myself, have trouble coming to terms with the reality. As a disease, it is hard to believe. At the 2009 Reno conference a male patient said to me, “CFS is not the worst disease, but it is the cruelest.”

The answer has to come through science. But the science has to be able to play itself out, the money has to be forthcoming, the effort by a very few has to be supported. It is not possible, it is intolerable, for the situation to stay as it is right now. A profound discovery has been made which may trip the switch in any number of directions. We need more people working on this, not fewer. We cannot afford to have this research stomped into non-existence. There are large forces out there who seek the demise of the WPI. XMRV research in CFS/ME is what is at stake here. We are engaged a large struggle and the recent conference confirmed the fact to me - that we are at the cutting edge like never before – and threatened like never before.

(Dr David Bell offers his opinions on the same subject here.)

5 comments:

  1. In regards to Martin Lerner's research into abnormal cardiac wall motion, cardiomyopathy, antivirals, etc. and Cheney's research into dilated cardiomyopathy and all the other stuff he does, there is a German group which has been studying viral myocarditis for the past few years and even presented at the 2008 HHV-6 Foundation main conference as well as at the satellite Conference on Viruses in CFS. This German group also uses antivirals to clear various cardiotropic viruses out of the heart, namely enterovirus, erythrovirus(parvovirus), adenovirus, HHV-6 A+B, and one other that I can't remember, CMV?

    It would be interesting to see if, and if then how, the two groups' approaches compared and contrasted. From what I've gathered, the German group is only able to make it's final diagnosis by doing heart biopsies and testing for viruses, but in America heart biopsies aren't really done anymore due to them being stopped in the 1960's(before the invention of antivirals) because the doctor's figured that even if they found something there was nothing they could do about it. There's no telling how big a subset these individuals are under the current umbrella 'CFS' definition. This has really flown under the radar, IMO.

    Dirk Lassner (Cardiac Disease Session)
    http://www.scivee.tv/node/6762

    Dirk Lassner (Parvovirus B-19 Session)
    http://www.scivee.tv/node/6898

    Published paper-
    'The German Transregional Collaborative Research Centre 'Inflammatory Cardiomyopathy--Molecular Pathogenesis and Therapy'. Methods and baseline results from a 3-centre clinical study.'
    Angelow A, Weitmann K, Schmidt M, Schwedler S, Vogt H, Havemann C, Staudt A, Felix SB, Stangl K, Klingel K, Kandolf R, Kühl U, Lassner D, v Schlippenbach J, Schultheiss HP, Hoffmann W.
    Cardiology. 2009;113(3):222-30. Epub 2009 Feb 25.

    http://www.ncbi.nlm.nih.gov/pubmed/19246898

    There's also a bunch of other papers by this group if you look under 'lassner' in pubmed, such as-

    'Parvovirus B19 profiles in patients presenting with acute myocarditis and chronic dilated cardiomyopathy', 'Immunohistological detection of Parvovirus B19 capsid proteins in endomyocardial biopsies from dilated cardiomyopathy patients' and 'Prevalence of erythrovirus genotypes in the myocardium of patients with dilated cardiomyopathy'.

    Also Kristin Loomis of the HHV-6 Foundation said a major complaint of these patients was simple 'fatigue', so there's really no telling how many 'CFS' patients are in this category.

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  2. Thank you Patient Advocate. As a patient myself, I wish someone like you had been around decades ago when I first got sick. Keep on telling it like it is!

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  3. Bless you for your honesty. It is so good to see someone not mincing words about what needs to be said. This is a fight for our lives, and I am so glad you are on our side.

    quote:

    We are engaged a large struggle and the recent conference confirmed the fact to me - that we are at the cutting edge like never before – and threatened like never before.

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  4. Wow! That post was like going to see a brilliant Blockbuster Movie. Thank you for playing such a vital role in providing an overview of the world of CFS research and treatment. I have a couple of questions.

    1. Are the reseachers/medicos and conferences organisers reading this yet? They should be. I believe you have huge potential to boost morale (ie Kerr) and influence change (ie Continued Collaboration). Like a one man CFS media.

    2. Having donate to the WPI how can I then donate to your cause? I'd love to see you well funded working on this as much as possible. I would happily put a case to my local organisation (ME/CFS Victoria, Australia) to send funds your way.

    Best,

    Joe

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  5. I have CFS and have wonderful patient advocates, my mother and now my husband. Thank you so much for writing. I have a blog about my illness but it is tough trying to find the energy and brain power to write all of the time. We need our patient advocates and those who know us best to speak up and rally for us and get the word out about CFS just like you have done. Vivint gives back project is giving money away to charities based on which charity gets the most votes. The Whittemore Peterson Institute is in 4th place. You can vote through Aug. 27th and I believe you get 1 vote a day. The voting is done through facebook

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