My trip to Reno was very productive. Energizing even. No crash this time (knock on wood). The nuts and bolts of the practice are getting worked out, but the exciting part to me is the synergy of like-minded people with complementary talents and skills. Never have I been exposed to a work environment where everyone is so passionate about what they are doing and why. All for one and one for all.
I am tolerating the stress pretty well. I bounced back from my crash/viral infection following my last trip fairly quickly. I regularly have waves of symptoms, but at a level where I can ride above it most of the time. The work is actually providing some escape from the physical reality of the illness. It’s a bit like carrying around a ball and chain all the time, but it reminds me to keep looking for the key to unlock it. For me, the illness is like living with a very strict Zen master. If I engage in any serious hand wringing, I get a rap across the knuckles. Emotional PEM (post exertional malaise) is almost instantaneous for me. Tough teacher.
Ali is not doing as well as she was a few months ago. I can’t even tell you if she is better or worse than when she started antiretrovirals, because some symptoms are still better, but she has new ones (inflammatory). It is not at all clear why she has taken this downturn. She is considering holding AZT to see if things are better, worse or no different without it. We don’t have clinical evidence that both RT inhibitors are better than one and AZT toxicity could be contributing to the energy deficit. Anecdotally, tenofovir has a clearer positive clinical effect than AZT. There are a few people who are improved on tenofovir alone and AZT alone seems to have little clinical impact. We experienced the most obvious improvement from antiretrovirals when we added tenofovir as a third drug. Ali’s gut feeling, and mine, is that AZT is not what is making her worse, but the drug has a short half life and it shouldn’t take long to see if she gets a lift when it clears her system. There are a few people that I know of who have stopped AZT for suspected side effects or mild anemia, but they are back on it or considering being back on it. I have heard of only one patient that stopped it for profound anemia requiring epo. At eleven months, we have no signs and have heard no reports from others of changes consistent with lipodystrophy or muscle atrophy. The only clear sign we have of toxicity is the expected macrocytosis and compensatory decrease in red cell number. However, there are a couple of patients who report improvement on tenofovir and raltegravir without AZT, probably an easier regimen to tolerate for the long haul if effective.
One of the things I’ve learned about the lay of the land is that scientific research happens in individual labs that generally don’t share with one another. The credit and intellectual property issues preclude much cooperation. I have a great deal of trouble with it, because real collaboration between scientists that wanted to help each other might illuminate rather than obscure the truth. Physicians are similarly isolated, but the reasons are different; it’s more about being over-worked, unsupported and disengaged. For most, the reasons why they became doctors are no longer anywhere in sight.
People write and ask me if I agree with this or that piece of the politics, but the medicine and science is all I can handle. As an observer, I am struck by the divisiveness in the ME/CFS community, when so many worthy common enemies abound. I am a newbie to the politics. I diagnosed myself when I read the Science paper, fifteen years into my illness and six years into my daughter’s. I am not typical of ME/CFS, by history or current clinical picture. I could still exercise for the first ten years of my illness and my symptoms were primarily neurological and vascular. Ali had a history of acute Lyme and subsequent crashes which responded to antibiotics. Neither of us had a viral onset. Childbirth and puberty were our triggers. The revelation was not about having a diagnosis of CFS. It was about having a retrovirus. That realization cleared up much of the mystery for me. With everything I’ve learned since, I still believe we are suffering from the effects of one or more retroviruses. A sad reality, but also our best hope. In the end, it will be about having an infectious disease, not a syndrome with a terrible stigma. Personally, I’d rather be a leper, than a psychotic malingerer. And with that happy thought, is there some way for us to put aside the internal strife and turn our attention to our common goals?
Bench-to-bedside is a translational research term used to describe the process by which the results of research done in the laboratory are used directly to develop new treatments for patients. The close relationship between the research lab and the clinic should take it still farther – the clinical findings will drive the direction of the research. Dr.’s Mikovits and Lombardi are committed to this kind of collaboration. In fact, an interdisciplinary blending of ideas has already begun. We are learning to speak each others’ languages. The camaraderie engendered by being down the hall from one another will nourish all aspects of the real work, which is to heal the patients.
Interview by Cort Johnson with more information about the clinic.
>You guys are great.Thank you for sharing. I laughed at what you wrote about rather being treated as a leper than a malingerer. I can relate.:)
Keith
>I so appreciate the openness with which you share your journey with us.
I'm glad that you a part of the WPI team.
I'm sorry to hear that Ali is not doing as well. Hopefully that will resolve soon.
I also agree about the diviseness in the M.E. community. It is disturbing and IMHO makes us look bad to outsiders.
We won't have a chance as long as the divisiveness continues. I've been dismayed to read on one particular message board how many people are gossiped about including M.E. MD's, patient advocates, other patients, ripping apart people who don't agree with their idea.
Many of us in the M.E. community describe this particular message board as the backstabber board!
I've been sick for 15 years and have never seen anything like it in the M.E. community.
I think there is a lot of tension that has built up in our community as we wait for the retroviruses to be validated by more positive studies.
I like how you described this disease as a relentless Zen master. So true!
>Thank you for your openness and your honesty, Dr. Jamie. I wish both you and Ali the best on your journey to health.
Unfortunately, the politics, which you say you cannot handle, is part and parcel of obtaining funding for XMRV research, and without that funding, there will be no progress in the science or medicine which you say you value. I have had this illness for a very long time and I have learned through hard experience not to squander my money or my energy on groups who are marching toward other goals. My goal is health, and the only hope I see for that is research into the XMRV retrovirus. The groups which seek to divert funding from XMRV research into their own treatment centers, or advertizing, or any other project are a diversion, and a dangerous diversion, in my opinion. If the XMRV research dies, then the new WPI clinic, and any other clinic treating M.E., will be back to the days of the supplement-selling clinics because there will be no real treatment for this illness.
The necessity is for funding XMRV research, and no matter how much you wish it otherwise, obtaining that funding is intimately involved with politics.
Patricia Carter
XMRV+, 24 years M.E.
>I took to staying away from the forums and communities, instead networking via Facebook, when I became too ill to follow the threads of the forums and communities well. I would just get lost and feel overwhelmed when I went there, but on Facebook every person is a person, easier for me to keep track of, and we share information pretty well.
One pleasant side effect of this is that each person being a person, is not a member of one forum or community that somehow becomes a faction. Nobody is banned and if there are disagreements each can handle them individually in their own ways.
FB doesn't fill all my needs and I appreciate blogs and sites that offer organized resource links. The resource you provide here, for example. I hope to get my own and my kids' gp's to take a look at your blog and pray that we'll somehow, someday get the benefit of the exciting bench-to-bedside work, and while I'm burdened as a disabled single mom with awful strains in daily life, I do find a way to engage in politics of one kind. The only politics we need: pressure for funding of appropriate research and care.
I can't follow the science myself and need someone to follow it for me and for my kids—if I could gods know I'd do for us what you've done for yourself and your daughter—but I'm so grateful that you are doing all that you do at home and at WPI and sharing it here.
Thanks, forever thanks, and I hope Ali will be feeling way better soon, for whatever reason!
~ Kassy
>Thanks for the update – I always appreciate your unique insights and am very curious to hear how you and your daughter are doing. Sorry to hear she's taken a downturn. I hope it is temporary.
I agree with you completely on the infighting among those with ME/CFS. I have tried to stay away from it for the 9 years I have been sick. Who has the energy? Also, as you say, we have plenty of common enemies, including the disease itself, that should join us rather than divide us.
I'm glad there are people like you focusing on what's important – research and treatment. Keep up the good work!
Sue
>You and your daughter have been extremely fortunate not to have had to deal with the politics of this illness as well as the illness itself. Here in the UK (and surely the US and elsewhere) it seems that unless the illness is disentangled from the politics, the ME community will never get the treatment that you are already receiving – we will continue to endure the neglect and isolation, in poverty. The political will is needed to change policy. Without it, no amount of discovery and progress in treatment will reach us and we will remain in the medical wilderness. ME is a heavily politicised illness. This is not a result of sufferers' behaviour or lack of unity, rather the carefully designed policy advice of Wessely and others to marginalise sufferers and the illness itself. Also, what effect do you think being told that the illness is all in one's head has had on the community? Or that a change in one's behaviour is where the solution lies? I can tell you, it has damaged the community immeasurably – physically and psychologically, and that's maybe what you are observing now. This is the daily politics of ME with which many sufferers have to live. The wonderful work of Lombardi et al will not stop us from being regarded as "psychotic malingerers" without addressing the politics. Politics trumps science – sad but true. Maybe scientists ought to join sufferers in the political arena – we're struggling to bring about the changes necessary for Government to acknowledge the existence of XMRV, nevermind testing, funds for research or treatment. Warm regards, Sarah Lawry, the probable "leper".
>I agree the patient community must achieve unity and I think we will. Politics is new to many of us and we are adjusting to culture shock. We lived through the politics of negelct for years, but that did not prepare the way to cope with what we are seeing in science after the XMRV discovery.
For some insight, Osler's web was hidden from me as an out of U.S. patient, and I didn't read rare books about the disease because I was far too sick. When I got a bit better and could pick up a book, I had a sick child to scrounge help and try to normalize life for. When I was faced with XMRV political flurry I was unprepared and down right burnt out from coping with two neglected illness for years.
It is no easy task orienting myself around health poltics when I am desperate to get my life back and get my children's life on track. It is a terrible position for patients to be in…to have to fight for the right to health and determinants of health along with compassion from family, freinds, and the public.
I have confidence patients will turn to each other for support and find the strength to move forward to help usher in humane care for themselves in a powerful unified way. We just need time to oreint ourselves and will move quicker with little help along the way.
Thanks for your collaberation with patients along with the team there, Hillary, Mindy and patient advocate groups among others. Collaberation is key for all of us to move forward I think.
>This is so exciting,
to see such scientific progress being made.
Thanks to the WPI.
>While we await further improvement for Ali and yourself, it's extremely important that you've heard of no ARV-induced lipodystrophy or wasting. Not something anyone wants especially if they've already endured some. It's one of the downsides of many surviving with HIV.
>Hi Jamie,
I am sorry to hear about Ali.
I am glad that your trip went well. I wish I could directly contribute skills in any capacity at the WPI.
Is there any sign of resistance to ARV in anybody? Would we expect it yet?
Also, do you expect "expected macrocytosis and compensatory decrease in red cell number" to be a problem for anybody?
Samuel Wales
>Good to hear you held up on your trip, and sorry about Ali. Maybe in her case it's a process of taking away a bunch of stuff, and then adding in one at a time to see if there is some interaction or something that's causing inflammation. Which could even be Vitamin D, it does that to some people. Hope she gets better again.
>Thanks for continuing to post with such enthusiasm about the future. Reading your blog always gives me something new to think about. It would be wonderful if the WPI can manage to organise/persuade some of the ME research community to follow the example of researchers of other diseases (Parkinson's? MS?) and they can start to share information quickly and freely between interested researchers/labs/clinicians. Its been a breakthrough in the search for answers and treatments in other diseases, lets hope it can help to do the same for ME. I hope your daughter finds some improvement again soon.
>Even though I am still quite incapacitated and lack energy to become a real activist, I have taken it upon myself to educate all of the medical practitioners I encounter — which you can hypothesize at the moment is quite a few. My anecdotal results thus far: very few even know about the existence of XMRV. Most have been quite interested. It may not make a big difference but it is a way I can create ripples in the pond.
>Me too Rita…I focus mostly on what I can do locally. I do a lot on my own that I don't talk about publicly. That feels best to me. I participate in larger advocacy only with groups at least trying to practice "principles before personalities", and tend to have less of a need for control. I find power struggles not only toxic, but also very boring.
In learning to manage this illness, one priority for me is the elimination of toxic energy. I try to keep that in mind along with our mission of helping each other to the finish line. I like to stick with the winners…and that would include you Dr Jamie.
>Sarah Lawry said:"Maybe scientists ought to join sufferers in the political arena – we're struggling to bring about the changes necessary for Government to acknowledge the existence of XMRV, nevermind testing, funds for research or treatment. Warm regards, Sarah Lawry, the probable "leper". "
You are so right, Sarah. Not only for the UK but for the US. We are where we are purely because of politics. That is, way behind where we could/should have been if politics had not been so effective all this time. Brain scans in the 1980s showed ME/CFS to be of viral origin – almost 30 years ago.
There's the politics of the CDC type – in favor of disability insurance companies like Unum, which is where all the "it's all in your head" disinformtion originates, on both sides of the Atlantic. Additionally, doctors trying to get research into the viral cause(s) of the outbreaks of the 1980s say that they found, in Washington DC, the story there was the government didn't want to fight two infectious viral illnesses at once and chose to fight HIV and let the rest of us lose our lives without quite dying.
Then there's the politics of those who have managed to make a good living off the existence of the illness and want to keep the status quo. They are the true backstabbers – the patient "advocates" who have a hidden agenda. The forum and the organization that do that have attacked WPI and especially Dr. Mikovits since the day the Science study came out. That one of them is now running to get to the head of the parade, after grinding and chipping away at Dr. Mikovits, the Whittemores and WPI for more than a year is a good sign, I hope, that this is the way the wind is blowing and the subtle sabotage of biomedical research will now end. It would be a refreshing change from the outright lies and the subtle distortions of the past.
Excuse me for taking it so personally, but every time one of these fake advocates sets back the research time line, as the political opposition to WPI/Mikovits has done, it greatly lessens the chance that I, and people like me, will EVER get treatment – before we die of one of the complications, or are too far gone to recover. Unlike the Congressman who told me, in 1991 (when I had already been sick for 9 years), he didn't get involved in the politics of science (while using his Congressional health care plan) and unlike people like yourself Dr. Deckoff-Jones, who still have insurance coverage or other resources to pay for the treatments that are obviously helping some, the vast majority of us have been so impoverished by the politics of this disease that we can't afford the tests and treatments that exist NOW. That we cannot get these tests and treatments was caused purely by politics.
You say the medicine and the science are all you can handle. I say that's plenty and I'm so glad you are doing the medicine and the science. I just hope your political innocence does not blind you to the politics that are still going on to this day. There are literally billions of dollars at stake and the love of money is the root of the evil that has so politicized the science. There are still many snakes in the grass. They will do whatever they have to to keep the status quo.
I deeply appreciate the medicine and science you do, as I do my part to help get the funding WPI needs and to educate the public on what is really true about this disease – medicine, science and politics.
If you ever have the time and energy, I hope you'll read Osler's Web by Hillary Johnson. Sir Osler might be the patron saint of WPI and those of you who choose to listen to the patient for the diagnosis, and to do hands-on research instead of fast flow-thru PCR.
>Don't mean to overstep, but if you didn't have PEM for the first ten years, i would think you didn't have ME then, but do now. I see PEM as the sine qua non of ME.
Do you have any musings about enteroviruses' and the related cardioviruses' potential roles in ME? Enteroviruses have been found, as you know. Cardioviruses seem to be a good theoretical candidate since they are associated with (sometimes chronic) encephalomyelitis and cardiomyopathy. For example Vilyuisk Encephalitis, the subject of a recent post by Prof. Racianello:
http://www.virology.ws/2011/02/10/is-vilyuisk-encephalitis-a-viral-disease/