Film critic Roger Ebert hosts Scott Jordan Harris who writes about an illness he knows too well, and discusses the movie "Voices from the Shadows".
The words dance on paper, he can explain better than anyone I know because he has this disease.
Here is the article from the Chicago Sun:
The movie "Voices from the Shadows" is available here:
Saturday, February 11, 2012
Tuesday, February 7, 2012
Another medical student educated!
This is the third year in a row that I do this, and all 3 times were great experiences.
Our local medical school has this yearly assignment for their first year med student: As part of their course: Patients, doctors and society, they are required to grasp the experiences of a patient living with a chronic condition. They visit at home and then they go back to their study group and talk about their patient's situation with their fellow students.
In my opinion this is a golden opportunity to educate young medical students about how terrible this illness is, what my experience with physicians has been, and how neglected this disease has been.
I talked about the fact that the onset of my illness was viral, and though I seemed to get respect when I got ill, I certainly lost it rapidly when I did not show signs of recovery, andin fact I was piling up more and more symptoms that were apparently unexplainable, unimportant and unworthy of my doctor's time.
I talked about the reluctance of all specialists to follow up a patient with ME- ME is an orphaned disease. It belongs to no specialty and i would advance that especially rheumatologists, they do not want to take us on. We are complicated amd require paperwork for disability insurance and else. Family physicians just don't have time for us, they don't have the knowledge base nor dothey want to acquire. that is my thought ad my experience anyways. So where do we turn to?
I talked about my experience of heading out to the US to get competent health care. How incomprehensible this was since I have been contributing to our so said universal health care system. i have now travelled to the US 3 times so far, 2 different experts with the hope that Rituximab treatment will be in my immediate future
I talked about the 411 000 patients in Canada, 23% more than 2005 according to the Community Health Survey, many ofthem totally removed from society, housebound ad bedbound with no health care.
I made sure to mention the tainted history this disease had with the CDC, outbreaks of the 1980's at were left unadressed and how the CDC diluted the case definition to include depressed and tired patients. kore on the CDC here http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Many, many physicians rely on the information from the cdc website and still to this day, their website tells our physicians to prescribe anti-depressants, psychotherapy, graduated exercise therapy and the like.
The medical student left with a copy of the new ME International Consensus Criteria, a copy of the Canadian Community Health Care Survey report, and a number of copies of pamphlets explaining ME and FM so she can share them with her colleagues.
All in all, I am very satisfied with this visit, i think that I made an impact on this student and that I haven't wasted my time. However I feel that so much more needs to be done, at a global level. We can only hope that the newer projects, notably the Chronic fatigue Initiative (I hate the name) http://cfinitiative.org/ will help break down barriers and get us some help.
Our local medical school has this yearly assignment for their first year med student: As part of their course: Patients, doctors and society, they are required to grasp the experiences of a patient living with a chronic condition. They visit at home and then they go back to their study group and talk about their patient's situation with their fellow students.
In my opinion this is a golden opportunity to educate young medical students about how terrible this illness is, what my experience with physicians has been, and how neglected this disease has been.
I talked about the fact that the onset of my illness was viral, and though I seemed to get respect when I got ill, I certainly lost it rapidly when I did not show signs of recovery, andin fact I was piling up more and more symptoms that were apparently unexplainable, unimportant and unworthy of my doctor's time.
I talked about the reluctance of all specialists to follow up a patient with ME- ME is an orphaned disease. It belongs to no specialty and i would advance that especially rheumatologists, they do not want to take us on. We are complicated amd require paperwork for disability insurance and else. Family physicians just don't have time for us, they don't have the knowledge base nor dothey want to acquire. that is my thought ad my experience anyways. So where do we turn to?
I talked about my experience of heading out to the US to get competent health care. How incomprehensible this was since I have been contributing to our so said universal health care system. i have now travelled to the US 3 times so far, 2 different experts with the hope that Rituximab treatment will be in my immediate future
I talked about the 411 000 patients in Canada, 23% more than 2005 according to the Community Health Survey, many ofthem totally removed from society, housebound ad bedbound with no health care.
I made sure to mention the tainted history this disease had with the CDC, outbreaks of the 1980's at were left unadressed and how the CDC diluted the case definition to include depressed and tired patients. kore on the CDC here http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Many, many physicians rely on the information from the cdc website and still to this day, their website tells our physicians to prescribe anti-depressants, psychotherapy, graduated exercise therapy and the like.
The medical student left with a copy of the new ME International Consensus Criteria, a copy of the Canadian Community Health Care Survey report, and a number of copies of pamphlets explaining ME and FM so she can share them with her colleagues.
All in all, I am very satisfied with this visit, i think that I made an impact on this student and that I haven't wasted my time. However I feel that so much more needs to be done, at a global level. We can only hope that the newer projects, notably the Chronic fatigue Initiative (I hate the name) http://cfinitiative.org/ will help break down barriers and get us some help.
Saturday, January 14, 2012
X-treme denial all over again
A piece of news surged this week. 12 girls from the same school started having Tourette-like symptoms. And parents are being kept in the dark as of why.
The officials do not want to speak publicly apparently because of the USA's privacy policy. That is so ridiculous. No cause is being discussed, parents are just being told to decrease the stress of their daughters because stress increases symptoms.
To the parents in that school I say: speak up. Make noise. It could be your kid. What is really going on here?
The officials do not want to speak publicly apparently because of the USA's privacy policy. That is so ridiculous. No cause is being discussed, parents are just being told to decrease the stress of their daughters because stress increases symptoms.
To the parents in that school I say: speak up. Make noise. It could be your kid. What is really going on here?
Wednesday, November 9, 2011
My CFSAC Testimony
It's been ages I have posted here.
Some disturbing news have come- with WPI and Dr Mikovits going their own ways.
Then some exciting news with the Rituximab paper. More on that later- if I have it in me.
Yesterday and today was CFSAC time, a twice a year, 2 days event where members of the CFS Advisory committee makes recommendations to the Secretary of Health Mr Sebelius for what directions their government should take to further the cause of CFS. It's a big exercise of "We recommend..." and go back 6 months later and nothing has been done and more recommendations pile up. It's been going on for decades. Why bother, I wonder? All we need is a bunch of parrots. That would be much cheaper!
But what the heck, I decided to write my testimony, for the 6th time. Here it is.
Some disturbing news have come- with WPI and Dr Mikovits going their own ways.
Then some exciting news with the Rituximab paper. More on that later- if I have it in me.
Yesterday and today was CFSAC time, a twice a year, 2 days event where members of the CFS Advisory committee makes recommendations to the Secretary of Health Mr Sebelius for what directions their government should take to further the cause of CFS. It's a big exercise of "We recommend..." and go back 6 months later and nothing has been done and more recommendations pile up. It's been going on for decades. Why bother, I wonder? All we need is a bunch of parrots. That would be much cheaper!
But what the heck, I decided to write my testimony, for the 6th time. Here it is.
CFSAC testimony November 2011
Dear CFSAC panel.
Thank you for your service. I hope that Secretary Sebelius truly listens to your directions and acts. Unfortunately I haven't seen much action since I got ill in the fall of 2008.
Over this past few months, we have witnessed some good scientific debates with exposure to other scientists, and great potential for research breakthrough and funding dollars. Still there is no promises and no grants have been promised, other than a 600 000$ to research behavior changes. Patients need more than a change of their behavior, in the same way that AIDS patients will not get better by eating less fat and more vegetables.
The CDC promised they would remove offending parts from their website. We have discussed it for the last years. They have not done one change to their website. So my physicians are still being told that I should exercise more, that they should prescribe more anti-depressants and that my natural killer cells should not be tested. It is critical that the CDC gets on with the program so to speak, and stops studying behaviors and psychology, association with painful periods and more gyne problems. Patients need to know if they have more chance to give birth to children that will have either autism or ME/CFS. Patients need to know if their disease is transmissible sexually or casually.
The CDC needs to apologize to all patients with ME/CFS for the despicable joke they have made of our disease. They need to recognize that they have been wrong since visiting Incline Village and since NOT visiting Lyndonville and take responsibility for stalling research as well as what they didn't do over the last decades, while other diseases like Rheumatoid Arthritis, HIV/AIDS, Cancer, and others benefited greatly from good research and funding.
CFSAC needs to recommend careful research on XMRV and human gamma retroviruses. Some patients are helped with the use of antiretrovirals, which has not been studied formally but prescribed to them compassionately. With the media outlets promoting contamination theory on both sides of the ocean, Dr Mikovits and her group's theory has been torn apart. Research in HIV would have stopped in 1983 but patients were dying so the government was forced into putting money into research. Here we are a very stigmatized group of patients who literally disappeared from society, however somehow it is considered ok to forget us over and over, because we are not dying, and because we are literally subdued- we can't even protest in the streets. It doesn't make it ok to keep on abusing us or make fun of us as a bunch of tired people. It is not ok for the governments of any countries to keep on abusing their patients and denying them a chance at being productive and thriving.
It is in my belief that clinical trial to confirm the very positive effect of Rituximab needs to happen as soon as possible. With this new data comes many questions. Is ME/CFS an auto-immune illness? Which patients are more likely to respond to Rituximab? Will rheumatologists embrace our illness and give us patients the opportunity to get well like the dozen of norwegians who benefited from Rituximab? How are the side effects and response rate comparing to Ampligen, which 15 years later is still not approved as an acceptable treatment for ME/CFS by the FDA?
How can CFSAC and Secretary Sebelius facilitate the involvement of rheumatologists with our illness, giving patients the possibility to get treatment near their community? Could this be legislated? The reluctance from the medical community to embrace ME/CFS as an illness is huge. There needs to be an intervention somehow, somewhere. Every single patients with our disease have at least 1 incident
where they feel they were disrespected, not believed, refused treatments and told to exercise and go to a psychiatrist. How many more suicide do we have to witness before our governments start to act? Patients have had hope for 2 years, and promises for clinical trials and treatments. This has yet to happen. Do we have to wait another 2 years until Rituximab can be approved?
Where is the hope when patients cannot see it at their local level and when the CDC cannot be trusted to spread the right message around the world?
Patients from around the world are looking up to you, CFSAC members and US government. The Norwegians have stepped up for their people. What will the USA choose to do?
Kati, sick for the last 3 years. Disability insurance in dispute. Financially going into a dark dark hole. Seen by a dozen specialists, 75% of whom lack respect for this disease. 15% more who have no clue as of what to do.
Tuesday, August 30, 2011
Simon Wessely goes crazy after the new ME Int'l Criteria Consensus publication
It's been a crazy summer.
Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.
Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.
One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.
Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.
The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.
Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)
Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer (July 4th)
Too soon to Translate? An editorial in Nature (July 7th)
RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)
EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)
Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.
Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.
One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.
Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.
The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.
Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)
Too soon to Translate? An editorial in Nature (July 7th)
RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)
EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)
Murdoch and Vaccines: Exposure of Crimes Reveals a Much Larger Story (July 17th)
James Murdoch is still supported by GlaxoSmithKline (Age of Autism-July 18th)
His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)
Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th)
New ME International Consensus Criteria (July 20th, Journal of Internal Medicine)
Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011
Chronic fatigue syndrome: understanding a complex illness (4 authors) July 28th
His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)
Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th)
New ME International Consensus Criteria (July 20th, Journal of Internal Medicine)
Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011
The real victims of ME are those with the disease (July 29th)
'Torrent of abuse' hindering ME research (July 29th)
BBC Radio 4 Today: 'Malicious' harassment of ME researchers (July 29th)
ME researchers 'receive death threats from sufferers' (The Telegraph July 29th)
The Economist: Head Case (July 30th)
Professor Hooper: Wessely’s Words Revisited (July 30th)
ME researchers 'receive death threats from sufferers' (The Telegraph July 29th)
The Economist: Head Case (July 30th)
Professor Hooper: Wessely’s Words Revisited (July 30th)
About "Shoot the Messenger and see it that will cure you" by Rod Liddle in The Sunday Times July 31st 2011
Hillary Johnson: Cry Me a River (Aug 3rd)
Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)
Guardian: CFS scientists face death threats from militants (Aug 21st)
Hillary Johnson: Animal Magnetism (Aug 21st)
Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)
Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)
Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)
Simon Wessly's piece in Spectator: Mind the Gap (August 27th)
Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)
The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)
Protesters have got it all wrong on ME (Aug 29th)
ME patients considered dangerous (Aug 29th)
Professor Simon Wessely's conflicts of interest
Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science? Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits, "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.
Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.
We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.
Hillary Johnson: Cry Me a River (Aug 3rd)
Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)
Guardian: CFS scientists face death threats from militants (Aug 21st)
Hillary Johnson: Animal Magnetism (Aug 21st)
Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)
Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)
Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)
Simon Wessly's piece in Spectator: Mind the Gap (August 27th)
Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)
The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)
Protesters have got it all wrong on ME (Aug 29th)
ME patients considered dangerous (Aug 29th)
Professor Simon Wessely's conflicts of interest
Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science? Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits, "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.
Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.
We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.
Monday, July 18, 2011
X-treme ignorance
in the past 2weeks, I heard 2 different stories of women that got denied health care even though they knew something was wrong.
The first one had a lump in her breast. she told the doctor who dismissed that as being part of fibromyalgia. It was cancer.
The second one is a long time patient with fibromyalgia also, Who had severe pain after a fall, was returned home with no treatment. 3 years later, after continuous suffering, she committed suiicide. her post mortem examination demonstrated that she had a pelvis fracture.
http://niceguidelines.blogspot.com/2011/07/post-mortem-shows-fractured-pelvis-yet.html
These stories show the horror of discrimination that us patients with invisible diseases go through day in day out. ME/CFS, Lyme disease and fibromyalgia are horrible, often lifelong diagnosis where it seems like many physicians are given the opportunity to think that any symptoms these patients report are fake, unreal, imaginary, and benign.
If you are a physician, a health care professional, or working with a few million dollars of health care budget, please remember that this patent could be your mother, your daughter, your brother, or your spouse. Also please remember that only a very small minority of patients invent symptoms in order to attract attention. All of us patients would rather live the only life we've been given by doing what we love dooing and not being in pain, in bed.
Nuff said.
The first one had a lump in her breast. she told the doctor who dismissed that as being part of fibromyalgia. It was cancer.
The second one is a long time patient with fibromyalgia also, Who had severe pain after a fall, was returned home with no treatment. 3 years later, after continuous suffering, she committed suiicide. her post mortem examination demonstrated that she had a pelvis fracture.
http://niceguidelines.blogspot.com/2011/07/post-mortem-shows-fractured-pelvis-yet.html
These stories show the horror of discrimination that us patients with invisible diseases go through day in day out. ME/CFS, Lyme disease and fibromyalgia are horrible, often lifelong diagnosis where it seems like many physicians are given the opportunity to think that any symptoms these patients report are fake, unreal, imaginary, and benign.
If you are a physician, a health care professional, or working with a few million dollars of health care budget, please remember that this patent could be your mother, your daughter, your brother, or your spouse. Also please remember that only a very small minority of patients invent symptoms in order to attract attention. All of us patients would rather live the only life we've been given by doing what we love dooing and not being in pain, in bed.
Nuff said.
Sunday, July 3, 2011
Letter to our canadian health minister
The honourable Leona Aglukkaq, Canada Health Minister.
Recently I have heard you assigning 5 millions into a clinical trial of “liberation therapy” for multiple sclerosis patients. These patients were going out of country to get this procedure done, and following their request to offer the treatment here in Canada, you agreed and allocated some money.
I am a patient with ME/CFS, (myalgic encephalomyelitis/ chronic fatigue syndrome) which is a neurologic disease as per the World Health Organization. This disease get very little respect in the medical world and very few physicians are knowledgeable about it. In fact I would be surprised that medical students get appropriate teaching about it. ME/CFS can be just as severe as someone with congestive heart failure, end-stage AIDS or progressive MS.
Patients with ME/CFS are usually left to their own mean, receive no medical care and can be very disabled by this illness. The burden it causes to society is enormous, from loss of wage, to medical costs to disability pension payments. Patients are also often discriminated against due to the name of this illness, since most physicians who haven't received any education for ME/CFS think this is quite a benign illness. Lots of patients will report that their physician do not take their symptoms seriously, like chest pain, headaches and other neurologic symptoms. In fact the 3 main causes of deaths for ME/CFS patients are cancer, cardiac events and suicide. Suicide happens due to the lack of support, medical care and beliefs that us patients are malingerers.
Mistreatments have happened in the past with MS patients who would be hospitalized in psychiatry and diagnosed with hysterical paralysis. Recent studies have shown that ME/CFS is not a psychiatric illness, does not get treated with cognitive behavioral therapy or graduated exercise therapy, and may be of infectious origin, from the work of Lombardi et al at the Whittemore-Peterson Institute and Shutzer et al.
Statistics Canada counted over 413 000 ME/CFS sufferers in 2010, a 25% increase compared to the last statistics in 2005. Yet recent studies have shown that 80% of ME/CFS patients do not get diagnosed as such and usually discounted as simple fatigue. The amount of money awarded for our illness has been abysmal, lower than 1 million dollar in total in the last 10 years, and most research have been of psychological or behavioral nature. In contrast, there are between 50 and 75 000 patients with MS in Canada that receive millions and millions of dollar in research every year.
Immunologists have proven immune activation and changes in cytokines, natural killer cell function and chronic viral reactivation which are totally ignored in Canada. Moreover, patients with ME/CFS may have an infectious retrovirus as per Lombardi et al.
Patients with ME/CFS get no healthcare here in Canada and no research. The numbers of patients are growing rapidly, however their concerns are still discounted. It is time that our governments who have once received our taxes wake up and start paying attention and stimulate research in our field. Moreover, it is time that the medical field wakes up and that more physicians get trained in caring for us. The fact that this complex illness belongs to no medical specialty is a travesty.
Currently in the USA a clinical trial (phase 3) of Ampligen is going on. Ampligen, an immuno modulator has been in the market for over 15 years now- yet it hasn't been approved to use. Patients should be offered this medicine so they can get relief from their illness and perhaps return to work. Patients should have the same access to health care as patients with cancer or HIV/AIDS.
Today Mrs Aglukkaq I am requesting your attention. Canada is hosting the international ME/CFS conference in Ottawa in September, yet, beyond our community, no one knows about it. I am requesting that you stimulate research funding for ME/CFS and recommentd physicians to get educated about our disease, and start offering treatments like Immunovir, Rituximab (Norway study) or Ampligen and anti-virals such as Valtrex and Valcyte (Lerner, Montoya). Pathogen studies like XMRV and other Gammaretroviruses should be of great concern for our governments and should be researched with great care.
It is time that our Canadian government pays attention to over 413 000 citizens who are sick and get no health care.
Thank you, Kati sick for 2 years and 8 months.
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