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 NIH. Show all posts
Showing posts with label NIH. 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.
Thursday, February 24, 2011
X-tra proteins?
For starters, check this out:
Dr Klimas says she has been filmed for 2 hours for just about 10 seconds of air time. The big news is a research that came out yesterday announced the presence of proteins in the spinal fluid of CFS patients that is not present in normal controls.
Funny that it came out less than a week after the psycho study huh?
Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome By Dr S. Schutzer et al.
Essentially, Dr Schutzer found proteins in the cerebro-spinal fluids in CFS patients that are distinct from chronic lyme patients and healthy controls, including some complement proteins, associated with inflammation. This means that we can tell scientifically that ME/CFS is real, and it is not an imaginary illness.
Well we knew that... We just had to let the scientists prove it. Of course more studies are needed. I hope they hurry...
In the meantime, one of our fellow patient Charlotte von Salis attended an education day at the National Institute of Health, it was a presentation by 3 doctors, Dr Shih-Shing Lo, Dr Harvey Alter, and Dr Fred Gill. You will be able to find the video cast here when it gets available for the public. It was only available to NIH people, but Charlotte has been able to attend and blogged about it, and one journalist/blogger Mindy Kitei hosted the blog post here here
What I have to say about it, and I won't be shy, is what the hell, NIH, what were you thinking? Mindy, in the comment section, said "The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy." Dr Fauci is a long time accomplice in keeping chronic fatigue syndrome in the shadow and keeping the disease classified (unofficially) as a psychiatric disorder. He is at the head of NIAID (National Institute of Allergies and Infectious Diseases) and has quite a large budget to manage, but won't share any of it with the CFS program. Anyways, it sounds like Dr Gill's presentation was as atrocious as the slides that we have been able to view before the presentation:
Dr Gill's slides
As a comparison, you can view the science as viewed by Dr Lo and Alter through their presentation at the same education day:
Dr Lo's slides
Dr Alter's slides
Patients with ME/CFS needs to know what is the agenda of the NIH and NIAID and why they perpetuate the corruption, discrimination and bad science of 25 years since the epidemics of the 1980's. ME/CFS science proved through 4000 papers that the disease is not psychiatric. There was a great opportunity this week to come clean and dispel the myths. So why inviting a doctor to spread more psycho-babble through the world, when XMRV has been twice linked to patients with CFS and abnormal proteins have just been found in the spinal fluid of patients ?
The psych lobby is playing big cards, almost desperately it seems, just the same way a husband is trying to hide a mistress. It ain't working. There are traces everywhere, and it's not perfume! The psych lobby group, the CDC, the MRC (Wessley school) have committed crimes to humanity. It's about to get uncovered. In the end, science always wins.
I will leave you tonight with another goodie from Hillary Johnson, a genius piece called Hey, Lazy Arses!
Dr Klimas says she has been filmed for 2 hours for just about 10 seconds of air time. The big news is a research that came out yesterday announced the presence of proteins in the spinal fluid of CFS patients that is not present in normal controls.
Funny that it came out less than a week after the psycho study huh?
Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome By Dr S. Schutzer et al.
Essentially, Dr Schutzer found proteins in the cerebro-spinal fluids in CFS patients that are distinct from chronic lyme patients and healthy controls, including some complement proteins, associated with inflammation. This means that we can tell scientifically that ME/CFS is real, and it is not an imaginary illness.
Well we knew that... We just had to let the scientists prove it. Of course more studies are needed. I hope they hurry...
In the meantime, one of our fellow patient Charlotte von Salis attended an education day at the National Institute of Health, it was a presentation by 3 doctors, Dr Shih-Shing Lo, Dr Harvey Alter, and Dr Fred Gill. You will be able to find the video cast here when it gets available for the public. It was only available to NIH people, but Charlotte has been able to attend and blogged about it, and one journalist/blogger Mindy Kitei hosted the blog post here here
What I have to say about it, and I won't be shy, is what the hell, NIH, what were you thinking? Mindy, in the comment section, said "The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy." Dr Fauci is a long time accomplice in keeping chronic fatigue syndrome in the shadow and keeping the disease classified (unofficially) as a psychiatric disorder. He is at the head of NIAID (National Institute of Allergies and Infectious Diseases) and has quite a large budget to manage, but won't share any of it with the CFS program. Anyways, it sounds like Dr Gill's presentation was as atrocious as the slides that we have been able to view before the presentation:
Dr Gill's slides
As a comparison, you can view the science as viewed by Dr Lo and Alter through their presentation at the same education day:
Dr Lo's slides
Dr Alter's slides
Patients with ME/CFS needs to know what is the agenda of the NIH and NIAID and why they perpetuate the corruption, discrimination and bad science of 25 years since the epidemics of the 1980's. ME/CFS science proved through 4000 papers that the disease is not psychiatric. There was a great opportunity this week to come clean and dispel the myths. So why inviting a doctor to spread more psycho-babble through the world, when XMRV has been twice linked to patients with CFS and abnormal proteins have just been found in the spinal fluid of patients ?
The psych lobby is playing big cards, almost desperately it seems, just the same way a husband is trying to hide a mistress. It ain't working. There are traces everywhere, and it's not perfume! The psych lobby group, the CDC, the MRC (Wessley school) have committed crimes to humanity. It's about to get uncovered. In the end, science always wins.
I will leave you tonight with another goodie from Hillary Johnson, a genius piece called Hey, Lazy Arses!
Saturday, February 5, 2011
X-traordinary expenses?
From XMRV Global Action
There is a request for action going around everywhere :
There is a request for action going around everywhere :
From Wildaisy,
Please feel free to copy and paste this letter or any part of it to send to anyone you want.
I sent the letter below to Kathleen Sebelius, Francis Collins, Dennis Mangan, Wanda Jones, my two US Senators from Florida and my Congressional Representative.
You can see discussion of this issue here: http://www.mecfsforums.com/index.php/topic,5276.0.html
Letter:
Myra McClure, Ph.D. has been appointed to membership on the Center for Scientific Review Special Emphasis Panel, ZRG1 CFSH80 2/22/2011-2/23/2011 meeting.
I protest this appointment for the following reasons:
1) Dr. McClure is not a United States Citizen. Why should a United Kingdom resident be deciding which applicants receive research grants in the United States? In addition to questions of legality which arise from this, there are further questions of expense, since Dr. McClure's travel expenses will, of necessity, be higher than those of a United States resident.
2) Dr. McClure has publicly stated that she has no interest in research in the area of Chronic Fatigue
Syndrome.
“Nothing on God’s Earth could persuade me to do more research on CFS.”
Source is this articlehttp://www.sciencemag.org/content/329/5987/18.summary
3) Dr. McClure has publicly stated that she is biased as to study of the XMRV retrovirus, which is a
active area of research in the area of Chronic Fatigue Syndrome.
"Professor McClure was a co-author of the paper published in Plos One in January 2010 titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” As the paper’s name suggests, this study found no evidence of XMRV or MLV in CFS patients or controls. This study can be found here:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519
Professor McClure has publically stated on many occasions that there is a high possibility that the XMRV/MLV related virus findings being implicated in CFS are a consequence of contamination."
I ask that Dr. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.
Cordially,
*********************************************************************
So here is the story. There is a committee that is part of the NIH (National Institute of Health) that decides if a request for grant for a research is approved or denied.
We have learnt that for ME/CFS, there are about 3 or 4 percent of the grants that are accepted this way. This is because the committee members that review the grant proposals are not knowledgeable about the disease and very likely do not think it is a serious disease. For the most part, the grants accepted relate to psychology and ME/CFS.
Recently the composition of the committee changed, and someone from the UK was invited to join, amongst the other ones, a retrovirologist who publicly said she would never research CFS again, and trying to replicate the WPI study, did not find XMRV, a novel retrovirus associated with ME/CFS either in patients with CFS or controls. She also went on a few interviews saying there is no XMRV and the WPI study is likely contamination.
Now, would you think there is a very strong conflict of interest that the committee accept a scientist that have an obvious aversion for this illness, doesn't believe in the connection with XMRV and will review grants applications?
If one was truly interested to advance science for a population of very sick people that's been neglected for 3 decades, would that be the way to go?
Clearly Myra McClure has made up her mind about contamination. And this is Vincent Racaniello's interview, it starts at about 48:30 minutes into the broadcast.
What patients need at this point, is open minded scientists and doctors, the kind that know what ME/CFS is all about. We need research grants to be awarded and science to prevail, not the insurance companies, not the interest of the governments. It is a travesty to think that millions of patients across the world have been ill for over decades without being able to get decent health care, or getting respect, the same kind one gets when they get cancer. We are human beings. We once had productive lives. We wish to return to a productive life.
Myra McClure doesn't belong on a US committee that determines who gets a grant and who doesn't She is biased. She works with people (Simon Wessley) who thinks ME/CFS is not a real disease. She has very likely never met someone with ME/CFS.
I urge the governments, the doctors and the patients to act and send e-mails and faxes to the NIH and their congressmen to remove Myra McClure from this committee.
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