"Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she ho...pes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
(Permission to re-post)
Emily's Appeal
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info
Saturday, May 28, 2011
Sunday, May 8, 2011
A very much needed commentary from Craig Maupin
I have been fairly quiet in the last month dealing with health issues and stressors that all patients with this illness encounter. However I could not skip this commentary from Craig Maupin, I think it is just and it is important for all advocates of our illness to read. I hope that each one of us take a look at the impact we are leaving behind us.
Our Advocacy: Lasting Damage Done,
Despite the Best of Intentions
By Craig Maupin at http://www.cfidsreport.com
In the cinematic realm, good intentions are always rewarded. Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but such strategy may still hurt vulnerable people --deeply and irrevocably.
Several actions by a small minority of the CFS community are hurting vulnerable people. Like most strategies, their actions may be well-intentioned. Through their efforts, this minority may feel an emotionally cathartic release and empowerment. Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.
I love this community. Like each of us, I have suffered and experienced great loss as a result of this biomedical illness. But counterproductive efforts compound that loss. To stand by and say nothing is to idly watch damage being done.
What strategies am I speaking of?
1. Verbal abuse and anger-fueled interactions with the scientific community.
This illness will never be defeated until we forge positive relationships with the scientific community. Period. A solution will not come any other way.
For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.
2. Unreasonable demands and heated interactions with journalists.
Solid journalists must tell more than one side of a story. Objectivity should be their job.
A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.
Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.
3. Patients acting as 'laymen virologists', passionately engaging the scientific community.
I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day. I say that with no hesitation. A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.
That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness. Sufferers of CFS desperately want hope. But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility. The scientific community undeniably knows the difference.
These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress. Published research by credible scientists is the best way to change perceptions about this disease. Laymen debating scientists -- on our behalf --will have the opposite effect.
4. Mass letter campaigns
Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy. I'll leave it at that.
Anger is often a byproduct of loss and suffering, and the CFS community has seen its share. But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts. If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed. The harm done may last decades.
Harmful and permanently damaging strategies may stem from very real problems. Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language. But trust, relationships, and credibility must be built over time, if we are to change perceptions. Our history is no excuse to deepen our problems.
These four strategies (listed above) are not helping those with CFS. Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process. In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me. Lasting damage is lasting damage, even if done with the best of intentions.
Articles on the CFS Report may be copied and posted to forums and other sites. Craig Maupin may be reached at editor@cfidsreport.com
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, March 31, 2011
Xtraordinary
Globe and Mail article
It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS programthat has been investigating false illness beliefs and sexual abuse as a child in CFS patients.
The Globe and Mail calls these diseases "rare". Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.
We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.
The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.
The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.
My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided? And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.
The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province. Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.
Since here in Canada we have socialized health care, I believe that the care that is paid by the system will consist of medical doctors and real science. At least I hope.
It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program
The Globe and Mail calls these diseases "rare". Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.
We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.
The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.
The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.
My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided? And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.
The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province. Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.
Since here in Canada we have socialized health care, I believe that the care that is paid by the system will consist of medical doctors and real science. At least I hope.
Friday, March 18, 2011
X-quoted
This is not my quote! I e--mailed it to myself, it came from last summer from a forum. I want to share it, from unknown poster.
"XMRV sequences are notorious for their false viral beliefs. They are lazy, slow replicators. They often employ the sick role and manipulate gullible herpesviruses CMV and EBV as enablers. They hide in tissue to avoid the viral responsibilities of circulating in blood, such as showing up for PCR tests. Malingerers!"
"XMRV sequences are notorious for their false viral beliefs. They are lazy, slow replicators. They often employ the sick role and manipulate gullible herpesviruses CMV and EBV as enablers. They hide in tissue to avoid the viral responsibilities of circulating in blood, such as showing up for PCR tests. Malingerers!"
Tuesday, March 15, 2011
Excuse me!
My mailbox received a special notice today from our supposed to be national advocacy organization. I mean, I am not american, I am canadian. But still. They were supposed to be the leaders, the protectors, the supporters of all of us, the lobbyists and the people to trust they will lead us in the right direction.
I am talking about the CFIDS Association of America.
And I am very sad to report that they did none of that.
You can fnd the notification from Kim McCleary here: Putting Research First
Here is Mrs McCleary quoted:
"Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.
I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust."
There is more to the message. But the flavor I get, and I may be wrong on that, is...
-I'm sowwwy... we won't do it again...
-Please forgive me, I am paid 180 000$ a year to admit that kind of mistakes we have done, and I am not going anywhere.
-"Our ressources are spread thin"... Yes, because you are losing the community's confidence and haven't done anything about it, and also because you are paid 180 000$ a year which takes away from research and advocacy money. Also... how about that 80 000$ faces of CFS picture tour that you did? Did that really help?
-What you are really saying, Kim, is you are walking away from patient advocacy and concentrating only on research. What I want to know is... is it really worth paying say...8-10 people to coordinate research and research money, when a not for profit institute like WPI could do it more effectively with less staff?
-Are you also saying that you will not speak publicly again on our behalf, because the last few press releases were not really successful. perhaps even harmful?
-The message is... we're not really good at patient advocacy, so let's do research. Does that mean that patients are not deserving of a body that focuses on advocacy for ME/CFS, and that does a good job at it, like AIDS advocacy, or MS, or ... fill in the blank?
I think this e-mail has been a very sad turn of event, in my opinion, looking at the whole history of CFIDS Association of America. It seems to me that things started to stall seriously from the mid 1990's.
What is needed, is someone with back bones. Patients have been stood up for decades now. We need highly influential people, someone that will make a difference NOW, not in 15 years. We need changes now. The time is now.
And while I'm at it... CFIDS name is retarded. No one calls it that anymore. Not that CFS is any better. But part of the advocacy is advocating for a better name for our disease. Oh, I forgot, you are not advocating for us anymore. Then I would suggest you lose the "association of America" too.
There has been a petition going around lately, to ensure that CFSAC, NIH and the CDC know that CAA do not represent me and do not speak for me. I have refrained from signing this petition. However today, I think I will sign it, because it is true, you inside voice is not representing me either.
Link to the petition
Khaly's blog post: CAA and advocacy, a guest commentary
I am talking about the CFIDS Association of America.
And I am very sad to report that they did none of that.
You can fnd the notification from Kim McCleary here: Putting Research First
Here is Mrs McCleary quoted:
"Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.
I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust."
There is more to the message. But the flavor I get, and I may be wrong on that, is...
-I'm sowwwy... we won't do it again...
-Please forgive me, I am paid 180 000$ a year to admit that kind of mistakes we have done, and I am not going anywhere.
-"Our ressources are spread thin"... Yes, because you are losing the community's confidence and haven't done anything about it, and also because you are paid 180 000$ a year which takes away from research and advocacy money. Also... how about that 80 000$ faces of CFS picture tour that you did? Did that really help?
-What you are really saying, Kim, is you are walking away from patient advocacy and concentrating only on research. What I want to know is... is it really worth paying say...8-10 people to coordinate research and research money, when a not for profit institute like WPI could do it more effectively with less staff?
-Are you also saying that you will not speak publicly again on our behalf, because the last few press releases were not really successful. perhaps even harmful?
-The message is... we're not really good at patient advocacy, so let's do research. Does that mean that patients are not deserving of a body that focuses on advocacy for ME/CFS, and that does a good job at it, like AIDS advocacy, or MS, or ... fill in the blank?
I think this e-mail has been a very sad turn of event, in my opinion, looking at the whole history of CFIDS Association of America. It seems to me that things started to stall seriously from the mid 1990's.
What is needed, is someone with back bones. Patients have been stood up for decades now. We need highly influential people, someone that will make a difference NOW, not in 15 years. We need changes now. The time is now.
And while I'm at it... CFIDS name is retarded. No one calls it that anymore. Not that CFS is any better. But part of the advocacy is advocating for a better name for our disease. Oh, I forgot, you are not advocating for us anymore. Then I would suggest you lose the "association of America" too.
There has been a petition going around lately, to ensure that CFSAC, NIH and the CDC know that CAA do not represent me and do not speak for me. I have refrained from signing this petition. However today, I think I will sign it, because it is true, you inside voice is not representing me either.
Link to the petition
Khaly's blog post: CAA and advocacy, a guest commentary
Sunday, March 13, 2011
Exposure in Wall Street Journal
The Wall Street Journal published another article by reporter Amy Dockser-Marcus on March 12th 2011.
Here it is: http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html
Here is the short version:
"Patients, Scientists Clash on Fatigue
Patients say scientists haven't worked hard enough to find the cause of chronic fatigue syndrome. Scientists say some patient advocacy slows research."
"Hopefully one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness."
Here it is: http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html
Here is the short version:
"Patients, Scientists Clash on Fatigue
Patients say scientists haven't worked hard enough to find the cause of chronic fatigue syndrome. Scientists say some patient advocacy slows research."
Ok Amy... Slow down a little bit...
Some patients have been ill for 30 years. 30 years is a long long time. Some 10 years. 10 years is still a long time to be sick with no health care whatsoever, problems with disability insurance (or worse, denial of said insurance) and being literally out of society.
As everyone knows, a paper published in Science has linked ME/CFS to a retrovirus called XMRV. It has created lots of controversy, including the very quick words of Mr Bill Reeves who was at the head of the CDC, who said that the CDC would check for the claim of the retrovirus, but chances are they wouldn't find it. Indeed, they didn't find the virus anywhere, in their tired cohort or in their controls. Many other scientists also quickly published their paper with no luck in finding the retrovirus, using only one lab technique and not using the ones that were specified in the Science paper.
Since then, there has been the first XMRV conference and many retrovirology conferences failed to invite Dr Mikovits to speak, including the recent CROI.
Part of the history of ME/CFS proves quite similar to many scientists trying to shush the XMRV story. Dr Elaine De Freitas then scientist at Wistar, found a retrovirus association with ME/CFS and the CDC and other scientists failed her, and failed to reproduce her study. She got her funding to research cut off and while she was preparing to prove this retrovirus she was involved in a car accident and got disabled with complications of this car accident. This was in 1991. No one even tried to find it. The topic was just dropped.
So in 2011, here we are, patients whose only voice is the internet, when we are well enough to get there. Patients have joined forces, somehow, in spreading the message that good science needs to prevail, and that money needs to be spend in elucidating the cause of ME/CFS.
ME/CFS is an orphan disease, no medical specialty is taking the illness under their wings. The funding has been minimal. Doctors have not learnt about the disease at school, or they have learnt that the patients' complaints are vague and perhaps of psychiatric origin. So over the years, patients have given up going to the doctor. Scientists have been told that researching ME/CFS was a career killer. So they turned towards HIV/AIDS research, perhaps cancer, safer options.
The CDC ensured that us, the patients would not get biomedical testing by posting on their website not to test unless it was to rule out other diseases. The CDC also seem to take pride in their own research, and post the best of the best, link of CFS with childhood trauma here.
Scientists, in this case, in Amy's paper, Stuart LeGrice, feel that patients are interfering with the research, and should leave scientists alone. Hmmm... Honestly, patients are quite worried that another extreme denial will happen and that good science will be buried to the advantage of organizations that want to save money, disability and health insurance. Governments. For them, status quo is good. And certainly unveiling lies, deceit, omission, mistakes, and gross incompetence would be embarrassing and very very costly.
So what is the solution?
Collaboration. Trust needs to happen. Patients need to be heard and should be included in government committees, conference planning and even (and especially) within the CDC. Patients are the experts in their own disease. They should be considered as colleagues by researchers and physicians.
Patients have all the time in the world and have researched their own disease and associated science. Dismissing this knowledge and the patients themselves delays research and finding treatments for us patients.
I will close with a quote from Dr Jose Montoya, a prominent infectious disease doctor based out of Stanford University, who said this at his recent talk at the university:
You can watch it here:
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