I am fairly new in the world of ME/CFS. 2.5 years of being sick is considered rookie of the year, compared to the veteran warriors out there who have been stuck with this disease for 10-20- even 30 years. 2.5 years of this hell, facing discrimination, bias, disbelief on top of being ill, and trying to cope, that's long enough. I can't imagine being sick for 10 or 20 years. I had plans for my life. The journey has changed direction drastically, and there doesn't seem to be motivation from the governments around the world to invest in research for this disease.
In October 2009, just a month or 2 after I realized that I may just have ME/CFS, Lombardi et al got published in the journal Science, announcing the detection of a new retrovirus in the blood of patients with ME/CFS and also in the blood of healthy control but at a much lower rate. I remember the day like yesterday. I had a dr appointment that day and brought the abstract to her. She didn't fall off her chair, and I couldn't understand why not.
See, there is a bias out there. Chronic fatigue, like many call it since it's shorter and more convenient, is not considered to be a real disease. The CDC says there are no biomarkers, they must be right. They also say that the treatment for this disease is anti-depressants, graduated exercise therapy and cognitive behavioral therapy. The bias started there. The CDC is supposed to be the authority, how can they be so far off, and why? What interest does the CDC have? Who is pulling the strings?
Soon after the Lombardi paper published, the head of the CFS program at the CDC announced that they would look for the retrovirus but it would be likely that they wouldn't find it. Dr Reeves is a psychiatrist. They didn't find it, as it happened in 2010, and in fact at the same time another replication study results was scheduled to be published in PNAS (Lo et al), however the CDC stopped them from publishing and that delay lasted several months.
Dr Coffin, prominent retrovirologist was invited to the October 2009 CFS Advisory Committee meeting in Washington and said that the Lombardi paper was as good as it gets for a first paper. He changed his tune a year later to claim contamination by mouse virus, leading to Retrovirology Journal to publish not one, but 4 different papers claiming that XMRV was just contamination or a lab artifact if you will.
Then just last week 2 more papers were published this time in Science, counteracting the claim of the retrovirus which prompted the editor of the journal to issue an expression of concern to Lombardi et al and requesting them to retract the paper. Dr Mikovits answered back with a "No way Jose!" (well something like that)
So here we are, us patients, waiting. While some are waiting for clinical trials and treatments, others felt they could no longer wait and decided to treat themselves with antiretrovirals. And guess what, for some of them, it's working! However some authors of negative studies like Ila Singh made it clear that patients should not get access to antiretrovirals due to toxicity issues. Dr Singh forgets that Tenoofovir is given to prevent HIV in gay men and also in women in Africa, so why would it be so toxic for patients with ME/CFS who don't even have a single drug approved by FDA to treat their disease?
Epidemics happened in the mid 1980's. Just about at the same time as HIV. However patients don't usually die of ME/CFS. Or at least it is not the official cause of death. And the CDC felt the epidemics were not true epidemics, and thought patients and doctors who cared for them were "hysterical". In an effort to contain the "hysteria" CDC decided to name the disease who was well defined in the past as myalgic encephalomyelitis, now chronic fatigue syndrome.
So doctors that see "chronic fatigue syndrome" in someone's chart as a diagnosis will consider all symptoms or problems as non urgent, not real, or not reasonable. The name discriminates more that one can think. Doctors have not learnt in med school about ME/CFS. Not many knows what to do, how to diagnose it (there are a few diagnostic criteria) or how to treat it. In fact, the doctors who have been there at patient's side all along, Dr Peterson, Dr Cheney, Dr Klimas, have been given the cold shoulder on more than one occasion.
So where are we going with all this? Patients are still waiting. There is still no more money allocated to research of ME/CFS, and ME/CFS still trails at the bottom of the list in the NIH funding competing with hay fever, climate change and gallbladder illness Check it out here. The big scorers, the usual HIV/AIDS, cancer, prevention, diabetes, cardio-vascular.
Despite a "State of Knowledge" workshop at the NIH, gathering experts and portfolio holders, and over 1 million of patients- a conservative number- just in the US, no new money has been announced, as the US government is in a financial crisis (though the military budget and NASA budget is ever expanding). Never mind that 1 million of people is debilitated and perhaps are transmitting this disease to their families. Never mind that these people could be you or your loved ones. Never mind that they have been sick for decades with no health care.
From a patient point of view, it is really hard to accept the reality that my tax money generously donated during the working years is not going to bail me out and that my government is not doing anything to get me healthy. It is really hard to accept that if I had cancer, I would already be a survivor and a hero, but if I have ME/CFS I have a malingerer status. It is really hard to accept that I may never go back on my bike again or travel the world again or enjoy the things I used to enjoy in the past. The cause of that would be poor decisions from the government and bias and discrimination.
So in 2011, the Whittemore-Peterson is still doing great research, however they have to fight allegation that their retrovirus is a contaminant, thus slowing their great research and our chances at prompt clinical trials and treatments. The WPI is still going underfunded by government grants and you can bet that the funds will dry quickly if more contamination papers get into the journals and the media splash that follows.
I still don't get the argument that blood of ME/CFS patients is more contaminated than the blood of healthy control- how do Coffin explain that? Contamination theory ain't working. People do not make antibodies when exposed to contaminant. Why isn't the Lombardi et al not yet replicated and getting papers saying they proved Mikovits wrong? Why do people do not believe that the Lo et al paper was a true replication? Why are Stoye, McClure, Coffin so adverse to a retrovirus affecting patients with ME/CFS, is it the disease, or is it the fact that they didn't find it despite spending so much time studying MLV's ?
As research is going on, the world is watching. Patients can no longer be silent and through the WWW, we have a voice. We are watching. We are asking the scientific community to take a good look at this disease and pay attention to what's going on. Patients need to politics to stay in one corner and the science to remain in a different corner. Governments need to fund research and take a good look at what has been going on at the CDC for so long. Equal opportunity for all is not happening for us.
Please help!
Showing posts with label Judy Mikovits. Show all posts
Showing posts with label Judy Mikovits. Show all posts
Saturday, June 11, 2011
Tuesday, April 5, 2011
Expectations
Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011. There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly, the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person. 2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.
It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.
Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.
This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.
My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.
The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.
So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.
The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.
It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.
Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.
This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.
My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.
The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.
So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.
The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.
Friday, January 21, 2011
Will they hear our whisper?
This is my story but this is also the story of some 240 000 + human beings in Canada who have no medical care. There are 17 millions of us around the world.
My story
I got ill in November 2008. I was working as a nurse and had to leave in the middle of the day with severe flu like illness. My manager was not impressed.
10 days later, still the same flu symptoms but no upper respiratory tract infection. My doctor tested me for Epstein Barr virus, it was positive. (acute mononucleosis). I am 41.
Employee health told 4 weeks off work and then I would be brand new and ready to go back to work. Unfortunately I didn't fit that mold. I tried twice to return to work but it was too hard. Then I got hit with a bad case of gallbladder issue, curiously without stones, and got hospitalized for 2 weeks. And everything got downhill after that.
I was expected to recover for 8 weeks after surgery and then return to work. However I had really strange symptoms 4 weeks after surgery, and my recovery really stopped. I was having a hard time being upright, I was dizzy even sitting up, let along standing. And then I was terribly sun sensitive. I had perception problems, making driving quite dangerous for a week or 2. I couldn't make sense of all these symptoms and my doctors thought I was faking and that I didn't want to return to work. She wanted to give me more anti-depressants, saying this is how you get treated.
In September 2009 I started having chest pains and shortness of breath and the doctor did nothing. A month later I still had symptoms and then I was sent for testing after expressing deep concerns for my care. My doctor had for idea that all my symptoms would go away by themsleves. I had to go through a functional assessement for my disability insurance which involved 2 days of tests to see if I was apt to return to work. The tests are not even showing how sick I am. After 2 days, the physio thought I should get intensive physiotherapy for 6 weeks, and then quickly go back to work. However just one day after testing, I got generalized joint pain and general relapse of all of my symptoms, and more, that lasted for 3 months. This is the nature of our illness, and not many believes us.
In January after waiting for 7 months for a rheumatologist appointment, I was told by the doctor she didn't do chronic fatigue syndrome within the first 5 minutes of the interview. I then saw an infectious disease dr at St Pauls hospital, who ignored my 4 months cough- and had nothing to say about my illness or possible infectious etiology.
That is when I knew that there was no health care for me in British Columbia. Having worked with cancer patients has not helped me understanding this truth, because honestly, cancer patients get world class care. Everything is taken care of for them, from financial issues, to emotional coping to driving to and from treatment and appointments, from as far as Hope, by volunteer drivers. You get all the treatments that you need and if you want to be treated till you die, so be it, our very generous health care system will pay for the very expensive drugs.
In June 009 I went to see Dr Nancy Klimas who is one of the very few specialists in chronic fatigue syndrome- or ME- in the world. She has worked with AIDS patients, Gulf War Syndrome patients and works at the university of Miami as an immunologist. In the spring I had the rheumatologist to apply to the government for out of country health care funding, which was denied to me for the reason that Dr Klimas' treatments were experimental. Dr Klimas, while being a researchers and writing papers, has seen and treating patients with ME/CFS for the last 25 years. She diagnosed me with an autonomic nervous system disorder called POTS (postural orthostatic tachycardia syndrome) ad got me started on medicine including atenolol. My family physician- and the ER physician- didn't even know what it was. And it explained my chest pain! Dr Klimas also assessed my immune system and virus reactivation, which happen with this disease. And it ends up that I have immune abnormalities, viral reactivations, all related to the ME/CFS disease. She recommended I get prescribed Immunovir, a drug that aims at strengthening the immune system. Interestingly the drug is not approved by the FDA, but there is a pharma company in Canada that gets her prescriptions, and then the pharma company contacts the patients in the US and it gets sent to them directly. For Canadian patients, it doesn't work that way. Since it is a prescription drug, it must be prescribed by a canadian doctor. No doctor wants to prescribe it to me, my family doctor says she is worried of getting in trouble because of it, and 2 of her colleagues have told her not to. The infectious disease doctor didn't want to prescribe it either. There are almost no known adverse effects associated with the administration of this drug.
Subsequently to my appointment in Miami I saw a respirologist (and after 11 months of serious coughing was diagnosed with asthma) an immunologist (who thought that Dr Klimas's testing was just like a big fishing expedition), an ENT, I had a sleep study, and a notice from my disability insurance company that they were stopping my disability benefits because I haven't been able to prove that I am unable to work. In their letter they explained that my skin, head, ears nose and nails were "fine" therefore I should be able to return to work. To this point, 15 months after getting ill, I am still getting no treatment at all, and no recognition that ME/CFS is a real illness. When I tell people that I'd rather have cancer- it's because cancer patients have a status in the society. They are ill. They get respect.
Patients with ME (the name chronic fatigue syndrome is insulting and misrepresenting to the patient community) have no voices. A lot of them are not strong enough to fight for their rights, and some of them are not even able to attend to their most basic needs. Some of my online friends have been bedridden for 20 + years. They have never been able to work marry, have children. A lot of the misconceptions of ME/CFS lies to the facts that it is a woman's disease, and that it's a psychiatric illness. Even the CDC, center for disease control wants to give the impression that CFS is not a serious illness, by propagating poorly constructed research (association of ME/CFS with sexual abuse as a child, making sure that no physicians tests patients for viral reactivation or for nervous system abnormalities)
The story with the CDC
When our doctors need to find information they don't know about a disease or condition, they refer themselves to the CDC website. If you need information about HIV you might be in luck. However when it comes to chronic fatigue syndrome, it is a disaster. Here is the story, as told by the author of Osler's Web, Hillary Johnson (Osler's Web). In the mid 1980's 2 internists from a small village of Incline Village near Reno Nevada, found that over 200 people were found to have a severe flu-like illness but never recovered. They were worried and called the CDC to investigate the epidemics. The CDC sent 2 junior epidemiologists that seemingly were more interested in casino and outdoor ventures than meeting with patients. They reported back to the headquarters in Atlanta with the conclusions that both patients and doctors were "hysterical". The same kinds of cluster outbreaks have been noted in the last few decades, but this time around the CDC decided to call it a different name- and to downplay the severity of the disease called it chronic fatigue syndrome. The story of the CDC with CFS is long and complicated, but suffice to say that they have been guilty of using the government funding for other things than researching CFS, and very little has been accomplished in terms of biological illness. In fact, the CDC researches the psychological aspect of "chronic unwellness" and finds their cohort subjects by random telephone calls asking if any of the members of family has been fatigued over the last 6 months. The CDC has been known to "diluting" the CFS definition criterias to include depressed patients, which in turn skew the scientific research and cheats the patients of adequate care. To this day the CDC website tells all the physicians in the world that CFS is treated with cognitive behavioral therapy and graded exercise therapy, amongst other things, and anti-depressants. They recommend not to investigate the disease through viral testing or neurological testing unless it is to rule out other diseases.
XMRV and links with ME/CFS
October 9th 2009 begins a new odyssey for millions of patients with ME/CFS. The most reputable scientific journal on the planet, Science, publishes a paper from a small research institute in Reno Nevada, with Dr Judy Mikovits at the helm, and announces a link between CFS and a new retrovirus called XMRV, which has been found some 3 years before with patients with an aggressive type of prostate cancer.
In this research, 67% of CFS patients tested positive for the retrovirus, using several methods of detection, compared to 3.8% in the healthy controls. Later Dr Mikovits said that they found XMRV in 98% of the patient population. 3.8% of the healthy controls means that a retrovirus is circulating in the general population without giving symptoms to the carriers. It also means that these people give blood and that likely this retrovirus is present in the blood supply.
There are only 3 retroviruses to be known in the human specie: HTLV, which can cause leukemias and lymphomas, HIV and XMRV.
Retroviral association with chronic fatigue syndrome is not new. Physicians implicated with the early outbreaks in the 1980's had suspicion of retroviral infection especially because they would see viral reactivations- which also happens with HIV. But with the lack of research funding, lack of interest for a disease called "chronic fatigue syndrome" and more than often mockery of the medical body, research did not happen. Dr De Freitas, a scientist in the US found a retrovirus of another kind in the early 1990 but this claim was refuted and quieted down by the CDC who refused to visit her lab in Philadelphia.
The Whittemore-Peterson Institute arose from the ground, litterally, out of love for a daughter. Mr and Mrs Whittemore have a daughter who got ill at an early age and were very frustrated with the lack of health care, the disbelief from the doctor that their daughter was really ill, and decided to fund an institute to find the answers not only for their daughter but also for patients just like her who never got answers as of why they were ill and how could they be treated so they could go back to a normal life. Dr Peterson is one of the doctors from the Incline Village epidemics, who worked relentlessly at trying to find out a cure, and they found a key researcher, Dr Mikovits to help them with the science part. The WPI has been (don't quote me on that) entirely privately funded.
Whittemore-Peterson Institute
The Whittemore-Peterson Institute arose from the ground, litterally, out of love for a daughter. Mr and Mrs Whittemore have a daughter who got ill at an early age and were very frustrated with the lack of health care, the disbelief from the doctor that their daughter was really ill, and decided to fund an institute to find the answers not only for their daughter but also for patients just like her who never got answers as of why they were ill and how could they be treated so they could go back to a normal life. Dr Peterson is one of the doctors from the Incline Village epidemics, who worked relentlessly at trying to find out a cure, and they found a key researcher, Dr Mikovits to help them with the science part. The WPI has been (don't quote me on that) entirely privately funded.
Whittemore-Peterson Institute
After the Science publication, a few studies tried to replicate this study but the attempts were very weak, with trying only one method and not selecting the patient cohort carefully. Patients also noted that psychiatrists were leading these researches, especially in the UK and Netherlands where ME/CFS is viewed as a psychiatric disease and treated the same way multiple sclerosis patients were once treated a few decades ago, as "hysterical". Patients still to this days get hospitalized in psychiatry and denied physical care and left soiled because they are unable to go to the bathroom by themselves. The CDC attempted such replication study, and despite being given 20 positive samples by Dr Judy Mikovits at the Whittemore-Peterson Institute, they found no XMRV in their patient cohort, and no XMRV in the control.
But 2 scientist groups joined efforts to do a good replication of Dr Mikovits' study, and in August 2010, Dr Alter from the National Institute of Health and Dr Lo from the FDA published a XMRV study finding XMRV in 87% of their ME/CFS patients and 7% of blood donors. They published in PNAS, another very reputable scientific journal.
Still to this day, scientists are going to war with this, the nay sayers claiming contamination with mice DNA. Dr Mikovits and the scientists that found the retrovirus stick to their guns, saying that the retrovirus is hard to find- it is small and present in low copies unlike HIV. However HIV was also difficult to find in the early years and its discovery was also enmeshed with political, ethical and moral issues.
The patients
While the controversy continues on the science side, patients are waiting. Some have been in bed for decades. Some didn't quite make it and chose to end their lives. Some children with ME/CFS have been removed from their family with accusations of munchausen by proxy.
1/3 of the patients from the Incline Village epidemics developed a rare form of lymphoma called Mantle cell lymphoma and other blood cancers. Patients also die of heart diseases. We will never know the human toll from this diseases because rare are the death certificate that mention ME/CFS.
With the increasing possibility of networking in your own bed, patients have gathered on social networking sites. However advocacy for yourself, when you have trouble cooking, showering or even communicating is really difficult. Stress is known to exacerbate the symptoms and can easily induce a relapse that can set you back weeks if not months. Patients have no voice. Isolation over time, loss of friends and family members, and inability to make new ones only make it more difficult to reach out and fight back just the way HIV patients fiifighted in the 1980's. Since disability insurance is incredibly difficult to get with the lack of support from the doctors and the lack of biomarkers, patients face poverty and financial disasters. However in December, monies were raised by patients to fund an ad in the Washington Post warning the populations of this new retrovirus, because the alarm has not been rung. Research funding is still less than most diseases for both the US and Canada. When cancer and AIDS and diabetes get hundreds of millions , if not billions in funding, ME/CFS got 5 millions last year in the US and less than 1 million in Canada for the last 10 years!!!
According to Statistics Canada, there was over 240 000 patients with ME/CFS in 2003. This number is astronomical to me, knowing how un-educated our physicians are about the disease. Not all doctors are aware of the new retrovirus.
Patients have taken in their own hands to send their blood in the US to get tested, and therefore seeking validation to what ails them. As for treatments... we are still hoping. A study coming from Utah by Dr Singh has found that 3 anti retrovirals have proven to be effective IN VITRO against XMRV. AZT, Raltegravir and Tenofovir. Some patients have convinced their physicians to prescribe these drugs for them, because there are no clinical trials to date and they feel that it is their only chance to get better. 2 physicians with MECFS and XMRV are taking these drugs, one is blogging about it and sharing her experience.
A patient's father has suddenly become a patient advocate and share his thoughts on the politics of the illness and how difficult it is to see a loved one suffering:
And a patient with XMRV, university professor, sharing her thoughts as a patient :
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