HAWMC Day 3 – Wordless Wednesday

Today's blog post as part of Health Activists Writers Month Challenge:
Post a picture that symbolizes your condition and your experiences.

Short stick. 

Feeling Small

Mad as hell. 

Fighting for justice.

Being in a dark place.

All photos are mine. Do not use without permission. 

HAWMC Day 2: 5 things you need to know about myalgic encephalomyelitis.

5 things you need to know about myalgic encephalomyelitis. 

1- The Name

Myalgic= sore muscle

encephalo= brain

Myel= spinal cord

Itis= inflammation

Patients call it M.E. 

The other name for the disease is "chronic fatigue syndrome", a very political move by the CDC to minimize the severity of the illness. No disease is called by a symptom. For instance, tuberculosis is not called chronic cough syndrome. If you must use the term "chronic fatigue syndrome, please do not shorten it by saying "chronic fatigue". 

2- The illness:

Patients often present with a flu-like onset or a viral onset, like getting mononucleosis for instance. and they don't recover. Think about getting the worst flu with the worst hangover, day, after day, after day. while some people have a relapsing/remitting illness, mine is progressive. I have no respite and gradually get worse. 

While it affects more women, especially in the middle of their lives, men and children are also touched by the disease. 

The laudry list of symptoms we get is varied and often seem benign but is not. The most important symptom is called "post-exertional neuro-immune exhaustion" or PENE which means if we are overexerting (go beyond our limits, sometimes just having a shower)- we get a worsening of symptoms that is very debilitating, and this can last for days, weeks or even months. 

Headaches, sore joints or muscles, autonomic nervous system dysfunction (blood pressure dysregulation for instance), immune abnormalities (either we get sick all the time or in my case haven't had a single cold in over 5 years), viral reactivations (EBV, shingles, HSV, CMV, HHV-6), crushing fatigue, cognitive dysfunction, pain and inflammation and GI disturbances to name a few. There is no FDA approved treatment for ME, and in fact just a handful of experts are available around the world. 

While patients rarely officially die of ME, unofficial records show that patients die 20 years early of cardiac events, cancer and suicide. 

There has been documented epidemics of ME, in the mid 1980's. One in Incline Village, Nevada, affecting over 200 people and another one in Lyndonville, NY, affecting mostly children. In both instances, the CDC who investigated decided that both patients and physians were "hysterical" and that there were no epidemics. 

This decision from the CDC sadly gave permission to governments, scientific and medical bodies to ignore the disease and not fund research, and patients still pay the price in 2013.

3- The Social Stigma

We are very often and wrongly seen as faking our illness, and malingering in order to get social or insurance benefits. We are seen as lazy people who don't want to work. 

Physicians do not want to care for us, and since the disease belongs to no medical speciality, specialists do not want to follow us if ever consulted. 

Scientists are being told it would be career suicide if they ever wanted to study our illness. 

A prominent group of psychiatrists in the UK portray our patient population as having "false illness beliefs", and caused by childhood abuse. They also spread propaganda like information like cognitive behavioral therapy and graded exercise therapy as the only treatments for our illness. (Researchers in California proved that exercise induce relapse and a cascade of genetic changes producing massive inflammation with minimal exercise). 

With patients becoming housebound and bedbound, isolation worsens, and we continue to be invisible to society, to the physicians and the government. 

4- The Neglect. 

HIV/AIDS was  first discovered in 1982. With billions of dollars in research funding, patients with HIV can now live a fairly normal life in 2013. Through governement campaigns, the stigma of HIV is greatly reduced and patients get respectful care regardless of their social backgrounds, being gay or IV drug user. 

M.E. epidemics were docuented in 1984 in several areas around the world. The governments decided it was not epidemics other than mass hysteria. Abysmal amount of funding in nearly 30 years results in an increasing population of sick patients who are for the most part unable to work. 

In Canada, a community-based survey estimated the number of patients with ME to be 200,000 in 2001 and 411,466 in 2010. And yet, there is no extra effort to find out more about us. ME is currently funded at a rate of 5 cents per patient per year in Canada. Parkinson's disease is funded at a rate of 400$ per patient per year. What is your life worth? 

5- The Impact

Billions of dollars in lost productivity and government revenues 

Billions of dollars in health care costs and government benefits. 

Shattered careers, shattered dreams, loss of income and savings for the future.

Broken, disrupted family lives 

Patients become invsible, it's like we don't exist. 

Remember that this is a lifelong illness and only a minority of patients make a complete recovery. 

Health Activist Writer's Month Challenge Day 1

I have just joined the Health Activist Writer’s Month Challenge, and despite being currently very sick I am taking the challenge on writing daily in April about my disease, myalgic encephalomyelitis (I will call it ME) also known as chronic fatigue syndrome (CFS)

For those of you who would also like to join here is the link to their Facebook page.

While I am a rookie at writer's challenges, I have been blogging about my health journey and also about advocacy and "bed activism" almost from the time I got sick with ME. 

Writing about this disease makes us the patients less invisible. See, there are millions of us confined to the walls of our houses, left behind by society and even family and friends. We have the stigma of laziness and sloth. People think we have an imaginary illness, that we don't want to work. 

Just this week a cardiologist talked about abuse of disability benefits and targetted diseases like ME and CFS and fibromyalgia as "excuses" patients gave to get disability. How ignorant, how insulting and how stupid. 

The truth is you don't want me to be your nurse. (I was a chemo nurse) I make medication errors on myself. I sometimes find my car keys in the fridge. These days it just feels I've been hit in the back of my head by a baseball bat. Doing calculations throws me in relapse mode. Sunlight and noise makes me want to crawl back to my bed and pullthe covers over my head. 

There is so much stigma attached to this illness; most physicians don't even know this is a real illness. Governments think it must not be that bad, hey, for the most part parents of young children have chronic fatigue. But chronic fatigue is to chronic fatigue syndrome what a match is to the atomic bomb. This comes from Laura Hillenbrand, who is also sick with the disease, author of Seabiscuit. 

So I am writing for awareness. I am writing for legitimacy and social justice. 

My hope is that people outside the ME community reads what I got to say this month. Let me know you're here. 

Petition to the Health Minister sent.

Over a year after creating the petition to the Canadian Health Minister, I finally printed it out and sent it. It feels good but in the same time I am not holding my breath. The following is the letter sent with it. I have also attached (with permission) Llewellyn King's fabulous piece on CFS, Margaret Parlor from the National ME/FM Action's piece titled Network's Inquiry to CIHR (CIHR stands for Canadian Institutes of Health Research) I felt that both needed to be added- and that the story of neglect and stigma needed to be told.

As a side note I am a terrible editor and notice the mistakes on this letter now... I just wanted to get it done and I am glad it is.

The Honorable Leona Aglukkaq, Tuesday April 2^nd 2013
Health Minister of Canada.

Madam.

I am writing you today to present you with an online petition that has been circulating since February 2012.

The petition request action from the Canadian government to fund research for myalgic encephalomyelitis, also known as chronic fatigue syndrome. I am please to say that 2486 people signed and over 260 commented with pleas for help.

Myalgic Encephalomyelitis is a serious disease for which the number of patients doubled in Canada from 2001 to 2010 according to the Community Health Survey. And yet your January 30^th response to Order Paper #1044 still mentions that the population is stable and that the disease is stable. This is far from the truth.

Typically patients with ME disappear from society and loose the capacity to get heard. Governments do not think it is a serious disease from its old name and physicians do not even hear about this disease while in medical school.

This disease also encompasses many institutes at CIHR which makes it difficult to nail funding. More popular diseases like diabetes, heart diseases, HIV/AIDS and cancer are favored by researchers, making diseases like fibromyalgia and ME left behind. In fact who would spend weeks and weeks applying for a grant for a diseases that is very unpopular and stigmatized when the chances to have it accepted are nil?

You have said many times that health care belongs to provinces, however it does not prevent you from getting involved with HIV/AIDS and also announcing a 100 millions funding for brain diseases.

There are 411 466 patients with Myalgic Encephalomyelitis in Canada (2010) who have no health care, no current Canadian funded research, high amounts of unmet health care needs, and I dare say a highly neglected and stigmatized disease across society, government, science and medicine. It is time that the Canadian government pay attention and start acting.

My February 2012 letter to you is still left unanswered despite receiving an acknowledgement letter from your office in the summer.
It would be worthwile for you to review it.
http://x-tremedenial.blogspot.ca/2012/02/letter-of-advocacy-version-february.html
Along with the petition papers I am attaching a letter titled “Network Inquiry to CIHR” (National ME/FM Action Network) and also an Op-ED by syndicated columnist Llewellyn King, with the hope that it may be useful to you in understanding the neglect and stigma to this disease.

Regards, Kati Debelic,  

British psychs publish more BS, FDA rejects ME drug Ampligen, patient on hunger strike

Lots is happening at the moment. And it's not good. 

It's been known for a while that the FDA (Food and Drug Agency) would decide on the fate of Ampligen, a drug that has been in clinical trials forever, since 1988 to be precise (I was barely out of high school back then) on February 2nd. Ampligen is an intraveinous drug that modulate the immune system in patients with ME. It is used by some ME experts in the US, as a trial drug, however patients have to pay for it- and it's not cheap. I hear it costs about 20 000$ a year, and you have to relocate if you don't live close to where the few physicians live. You'd have a choice of North Carolina, Miami or Incline Village (Tahoe), as far as I remember and you need to be on it for at least a year to decide if it's working or not. 

So as we are approaching February 2nd, patients get antsy. Don't blame us. Approving a drug for ME has never happened in the history of this disease, anywhere in the world. It would mean recognition that our disease exist and that it's not in our heads. It would mean that at least one government recognize that this disease is serious and warrants research and appropriate levels of funding. 

Then the British psychos showed up. They published yet another paper about how cognitive behavioral therapy and graded exercise therapy are effective therapy for ME. The paper is available here. Get this, the title of the journal is "Psychological Medicine". Coincidence that they published just days (January 31st) away from the FDA decision? I don't think so. If you take a look at my previous posts about Wessely, you would see that his "coming out" times are usually in reaction to what is going on with other happenings in the ME community. Opportunistic they are. And vile. 

I have mentioned this several time the PACE trial, what is discussed in the paper, included a very diluted cohort of chronically fatigued patients, including patients with depression and others. Patients with depression, get this, feel much better after exercise. Patients with ME feel much worse after exercise. And those who know me personally know that I had a great life before getting sick. I loved my bike and I had much plans for myself, all of which I had to give up when I got sick. Attempts to "get back in shape" after my surgery got me worse and worse. 

February 2nd came and went. No news from either the FDA and Hemispherx, the company that makes Ampligen. It's been a week end of angst for me and I suspect many of us patients awaiting for the news. And then tonight, it came and the news weren't good. Hemispherx issued a press release, which is available here.

Hemispherx Biopharma Receives Complete Response Letter From FDA on Ampligen(R) New Drug Application for Chronic Fatigue Syndrome

PHILADELPHIA, Feb. 4, 2013 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc. (NYSE MKT:HEB) (the "Company" or "Hemispherx"), announced that it received a Complete Response Letter from the US Food and Drug Administration ("FDA") declining to approve its new drug application ("NDA") for Ampligen® for Chronic Fatigue Syndrome ("CFS"). The FDA said Hemispherx should conduct at least one additional clinical trial, complete various nonclinical studies and perform a number of data analyses.

In its Complete Response Letter ("CRL"), the FDA set forth the reasons for this action and provided recommendations to address certain of the outstanding issues. The Agency stated that the submitted data do not provide substantial evidence of efficacy of Ampligen® for the treatment of CFS and that the data do not provide sufficient information to determine whether the product is safe for use in CFS due to the limited size of the safety database and multiple discrepancies within the submitted data. 

In the two pivotal clinical studies that form the basis of approval for Ampligen®, Hemispherx believes that the primary efficacy endpoints were met and that they showed a statistically significant improvement (i.e., with a p-value of 0.05 or less). The FDA and Hemispherx do agree that in clinical study AMP-502, the primary endpoint was met (p=0.02). In clinical study AMP-516, the FDA's analysis resulted in a p-value of 0.10, while Hemispherx's calculation resulted in a p-value of <0.05, and yet both analyses indicate that those patients on Ampligen® improved over those on placebo. With regard to safety, Hemispherx has provided data from the 845 subjects who have received Ampligen®, including 589 subjects suffering from severe CFS and over 200 CFS patients who have received Ampligen® for at least one year or longer. The Company believes that these data are sufficient to determine the safety profile of Ampligen®.  At the December 20, 2012 FDA Advisory Committee meeting, 8 of the 13 Advisory Committee members voted yes on the question of "Is the safety profile of Ampligen® adequate for approval for the treatment of CFS?"

Hemispherx plans to request an end-of-review conference with the FDA as a precursor to submitting a formal appeal to the Office of New Drugs in the FDA's Center for Drug Evaluation and Research regarding the Agency's decision. The purpose of the conference is to review all of the issues raised in the Agency's CRL as well as to discuss the corroborating data and experiences of clinicians and patients who have seen the benefits of Ampligen® therapy. 

Hemispherx has become aware that a prominent CFS advocate and long-time CFS sufferer, who has been on Ampligen® since 1999 through a treatment IND, began a hunger strike on January 30, 2013 to seek FDA approval of Ampligen®.  Hemispherx understands the frustration that there is still no FDA-approved treatment for CFS and the concern that patients may lose access to Ampligen® therapy. Out of concern for the health of the CFS community, Hemispherx has asked any hunger strikes be discontinued and that patients join in a collaborative effort between the FDA, Hemispherx, CFS clinicians and patient advocates to find a solution to this significant unmet medical need. 

In the past, the FDA has shown great willingness to work with stakeholders to find solutions for serious and life-threatening illnesses. Dr. Margaret Hamburg, Commissioner of the FDA has previously stated that, "FDA has an important role to play in shaping the future of medical breakthroughs by bringing stakeholders together to identify and overcome challenges." Hemispherx hopes that the FDA will view the Ampligen® end-of-review conference as an opportunity to involve patient advocacy, clinicians and researchers in a concentrated effort to do something for these patients over the near-term, including further evaluation of how new legislation, such as the recently enacted "FDASIA" statute, may have a role in finding a solution. The views of one internationally recognized researcher/clinician, Dr. Nancy Klimas, who has over 20 years' experience evaluating and treating CFS patients, can be found at http://www.sciencedaily.com/releases/2013/01/130124183448.htm

DISCLOSURE NOTICE: The information in this press release and the article referenced therein includes certain "forward-looking" statements (explained below), including statements about the remaining steps, including the aforementioned end-of-review conference and appeals process, which the FDA may require and Hemispherx may take in further seeking FDA approval of the Ampligen® NDA for the treatment of Chronic Fatigue Syndrome. The final results of these and other ongoing activities could vary materially from Hemispherx's expectations and could adversely affect the chances for approval of the Ampligen® NDA.  Any failure to satisfy the FDA's requirements could significantly delay, or preclude outright, approval of the Ampligen® NDA. 

About Hemispherx Biopharma

Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company engaged in the manufacture and clinical development of new drug entities for treatment of seriously debilitating disorders. Hemispherx's flagship products include Alferon N Injection® (FDA approved for a category of sexually transmitted diseases) and the experimental therapeutics Ampligen® and Alferon® LDO. Because both Ampligen® and Alferon® LDO are experimental in nature, they are not designated safe and effective by a regulatory authority for general use and are legally available only through clinical trials with the referenced disorders. Ampligen® is an experimental RNA nucleic acid being developed for globally important debilitating diseases and disorders of the immune system including Chronic Fatigue Syndrome. Hemispherx's platform technology includes components for potential treatment of various severely debilitating and life threatening diseases. Hemispherx has patents comprising its core intellectual property estate and a fully commercialized product (Alferon N Injection®). The Company wholly owns and exclusively operates a GMP certified manufacturing facility in the United States for commercial products. For more information please visit www.hemispherx.net.

Forward-Looking Statements

To the extent that statements in this press release are not strictly historical, all such statements are forward-looking, and are made pursuant to the safe harbor provisions of the Private Securities Litigation Reform Act of 1995. Words such as "believes," "plans," "anticipates," and similar expressions are intended to identify forward-looking statements. These statements are based on the company's current beliefs and expectations and represent the Company's judgment as of the date of this release. The inclusion of forward-looking statements should not be regarded as a representation by Hemispherx that any of its plans will be achieved, including its intent to pursue the end-of-review conference and appeals process. These forward-looking statements are neither promises nor guarantees of future performance, and are subject to a variety of risks and uncertainties, many of which are beyond Hemispherx's control, which could cause actual results to differ materially from those contemplated in these forward-looking statements. Examples of such risks and uncertainties include those set forth in the Disclosure Notice, above, as well as the risks described in Hemispherx's filings with the Securities and Exchange Commission, including the most recent reports on Forms 10-K, 10-Q and 8-K and Hemispherx's beliefs that the Ampligen® NDA may be covered by the new provisions of the FDASIA statute, which are subject to FDA interpretation and implementation, or that such provisions, if applicable, will be helpful with regard to obtaining FDA approval of the Ampligen® NDA. You are cautioned not to place undue reliance on these forward-looking statements, which speak only as of the date hereof, and Hemispherx undertakes no obligation to update or revise the information contained in this press release, whether as a result of new information, future events or circumstances or otherwise revise or update this release to reflect events or circumstances after the date hereof.

CONTACT: Company/Investor Contact:
         Dianne Will
         Hemispherx Biopharma, Inc.
         518-398-6222
         ir@hemispherx.net

Source: Hemispherx Biopharma, Inc.

And lastly patient activist Robert "Bob" Miller has started a hunger strike on January 29th to protest the lack of action in the field of ME. The news wrenched my heart. We are this desperate for health care, and desperate for funding. The governments do not want to hear us. We are invisible, we are too weak to protest on the streets, too sick and usually too poor to travel to the parliament and capitol and ask for that piece of pie. In the US, 6 millions out of 32 billions of the health research budget goes to ME. That is peanuts. We are not crumbs.

So Bob, I command your action though I really feel for you. Please do take very good care of yourself. I hope they hear and keep in contact with you. We need change. NOW. Not promises that are never followed through. We do not need a promises, now it's time to show the immediate plan of action and the budget for it.

You can follow Bob's hunger strike's development on his facebook page.

Leona Aglukkaq thinks 5 cents per patient for ME research is ok

Answers from the Canadian government have come yesterday. Back in October, Toronto MP Carolyn Bennett tabled a few questions at the House of Commons. The Health Minister answered them orally. you can find the questions, the answers and my comments which were sent back to Dr Bennett's office.

Question No. 1044--

Hon. Carolyn Bennett: 

With regard to Canadians diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): 

(a) what funding has been allocated to research this illness in the last two years;

(b) how does the government propose to encourage Canadian research into ME/CFS so that the level of research into this complex, multi-system illness is commensurate with its extent and impact; 

(c) what is the government doing to develop strategies and programs to meet the needs of Canadians with ME/CFS; 

(d) how is the government ensuring that health professionals are aware of the following documents, 

(i) the Canadian Consensus Document for ME/CFS (ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners), 

(ii) Canadian Consensus Document for Fibromyalgia (Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners); 

(e) when will the government perform the following tasks in relation to the Consensus Document for ME/CFS posted on the Public Health Agency of Canada's website, 

(i) improve the location of the document on the website in order to facilitate location of this document, 

(ii) post the French version of this document; 

(f) why is the Fibromyalgia Consensus Document not posted as a Guideline on the Public Health Agency of Canada's website; 

(g) what steps is the government taking to ensure that health professionals, patients, and the public have access to science-based, authoritative and timely information on ME/CFS; 

(h) how soon will the government post other information related to ME/CFS on government websites; 

(i) what is the government doing to ensure access to ME/CFS knowledgeable physicians and appropriate health care on a timely basis and how are they working with the provinces, territories, professional organizations, educational institutions and other stakeholders to meet these needs; 

(j) how is the government working with stakeholders to deal with other needs of Canadians with ME/CFS shown by the 2005 Canadian Community Health Survey (CCHS) including, 

(i) reducing the levels of unmet home care needs, 

(ii) reducing the levels of food insecurity, 

(iii) increasing the sense of community belonging experienced by Canadians with this condition; 

(k) how will the surveillance report on ME/CFS, prepared from analysis of data collected from the 2005 CCHS, be used to improve the situation for Canadians with ME/CFS; and 

(l) how will the government monitor the extent and impact of ME/CFS and these other conditions on an annual basis given that questions regarding ME/CFS, Fibromyalgia and Multiple Chemical Sensitivities were dropped from the CCHS after 2005? 

Hon. Leona Aglukkaq (Minister of Health, Minister of the Canadian Northern Economic Development Agency and Minister for the Arctic Council, CPC): 

Mr. Speaker, the government supports provincial and territorial health care delivery through fiscal transfers and targeted programs. Unlike previous governments that balanced their books on the backs of the provincial and territorial governments, we have committed to a long-term stable funding arrangement that will see health care transfers reach historic levels of $40 billion by the end of the decade. Health transfers from the federal government to provinces grew by 40 percent between 2005-2006 and 2012-2013. Our investments in health care will help preserve Canada’s health care system so it will be there when Canadians need it. 

With respect to research and awareness, in May 2008, the Public Health Agency of Canada, PHAC, and the Canadian Institutes of Health Research, CIHR, coordinated a meeting with the Myalgic Encephalomyelitis Association of Ontario and other stakeholders to explore ways to increase knowledge and awareness of myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS, and to address research needs. This meeting led to the first Canadian national scientific seminar on ME/CFS in Calgary in November 2008. This seminar was held to raise awareness, increase medical practitioners’ knowledge, and improve medical treatment for patients with ME/CFS. An article on this seminar was published by PHAC and can be found at http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/29-3/pdf/cdic29-3-6-eng.pdf. 

CIHR has invested $28,000 since 2009-2010 in research related to ME/CFS. In addition, CIHR’s Institute of Musculoskeletal Health and Arthritis, IMHA, has set aside a separate pool of funds in its undergraduate studentship program for myalgic encephalomyelitis and fybromyagalia. Details are available at http://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=1699&view=currentOpps&org=CIHR&type=AND&resultCount=25&sort=program&all=1&masterList=tru.e.

Surveillance of ME/CFS and fibromyalgia is undertaken by PHAC in looking at trends in disease prevalence in order to inform program and policy decisions. Data from the 2010 Canadian Community Health Survey, CCHS, allow PHAC to produce scientific surveillance information on ME/CFS, raise awareness and support efforts to increase understanding of the impact of these conditions. 

The questions on ME/CFS, fibromyalgia, and multiple chemical sensitivities were asked of all CCHS respondents in 2010. Analysis of the 2005 and 2010 data demonstrated that there were no changes in the prevalence of these conditions in this five-year period; therefore, maintaining the data collection on these conditions every four years is appropriate. 

The Public Health Agency of Canada's website is aimed at delivering information and services to users that are relevant and applicable to its mandate and that of the Government of Canada. While PHAC facilitates the sharing of clinical information via its website, it is the responsibility of health care professional associations and medical bodies to ensure that relevant clinical information is available to their members. The following documents are available at the links indicated below: Canadian Consensus Document for ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners at http://www.phac-aspc.gc.ca/cd-mc/az-index-eng.php#C; and Canadian Consensus Document for Fibromyalgia: A Clinical Case Definition and Guidelines for Medical Practitioners at http://www.phac-aspc.gc.ca/cd-mc/az-index-eng.php#F.

http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/29-3/pdf/cdic29-3-6-eng.pdf

And here is my reply to the office of Carolyn Bennett, MP

Thank you for giving me the opportunity to comment on remarks made by Hon. Leona Aglukkaq as it relate Order Paper 1044.

i am one of at least 411 500 patients with myalgic encephalomyelitis in Canada. There are also over 450 000 patients with fibromyalgia as well. These 2 disease are the most neglected of all diseases. Federal funding for research is abysmal. moreover, rheumatologists want to get rid of fibromyalgia as diseases they treat, leaving patients high and dry with family practitionners that have no time, no interest, and no knowledge. ME does not belong to any medical speciality and a bit of proding around will reveal that patients know that most physicians want nothing to do with their disease. I have a letter from a rheumatologist saying he has no time nor interest to deal with ME patients. This disease needs to be assigned to a medical speciality (not psychiatry) or a new one needs to be made. We are complex patients with multi-system issues. We need evidence-based medicine and treatments. Current trends in the field is that this might well be an auto-immune condition. 

The population of ME patients has doubled from 2001 to 2010, according to the community health surveys. Why is no one worried? Why is this not a public health emergency? Why is no one investigating this? If this were HIV/AIDS, the canadian government would give more millions, on top of what this disease is already getting. 

Cost to society from these diseases are counted in billions. Loss of productivity, disability benefit, welfare, health care costs. These diseases are not going away and for the most cases, they are lifelong. It is very ironic that thy affect mostly women. 

Federal funding for research for ME, as said by Mrs Aglukkaq totals to 28,000$ since 2009-2010 or about 14 cents per patient, or roughly 5cents per year. Is that something to be proud of? Compare this to the funding that patients with MS get, cancer, HIV/AIDS, diabetes. 

We patients with ME and fibromyalgia have been failed and left behind. Research is not happening, in fact most researchers feel it would be a career suicide to research us. We are multi-system diseases which encompass immunologic, endocrine, musculo-skelettal, nervous system and more. The CIHR model doesn't work for us. 

As for the transfer to provinces and Canada Health Act, again it doesn't work for us. Patients are failed, and many of them have given up on seeing doctors who can't or are not willing to treat their condition. When I write to my province about health care for my disease, they send me back to the federal. Moreover because ME does not belong to any medical speciality, no one knows what to do. Medical schools are not prepared to teach this disease professors have no idea. Meanwhile, we are waiting for 2014 when the next question will be asked about ME in the Community Health Survey. Last question was in 2010.

Leona Aglukkaq has chosen to respond verbally to this Order paper because it allowed her to not answer questions about unmet needs, food insecurity and many other questions Dr Bennett prepared. It allowed her to cut corners, and on top of that took advantage to the fact of the Christmas holidays at the House of Commons to delay answering by 6 weeks. 

Today I am asking for action.  I have been sick and unable to work for 4 years, my condition is worsening and not only do I want my life back, I want to prevent others from getting sick with this disease. 

Wessely gets knighted

Sigh. The news came out just before New Year.

simon wessely, the psychiatrist who has de-legitimized myalgic encephalomyelitis, and who has gone in many countries telling government officials and physicians that this disease is a disease of the mind, has been proclaimed a hero by BBC. It seems like this time around he is honored mostly for his work with soldiers with Gulf War Illness- from the Desert Storm of 1991. See, Wessely is basically saying that soldiers have been inventing themselves an illness too. Yep, all in their heads.

How can this happen?

Well, for one it is very convenient for government officials to deny a whole disease, it costs them less. They don't have to pay benefits, and for those like us Canadians who have a socialized health care system, it costs the government less in health care.

Secondly, I hear that the British does not necessarily have their ducks in a row when it comes to knighhood. For instance, English DJ and BBC television presenter Sir Jimmy Savile (1926–2011) who was previously knighted and got accused after he was death of many, many sexual abuses of young boys and girls.

What does it mean? Well, other than being an insult to me, and likely many of my fellow patients especially those sick in the UK, (I am so sorry, brits) I will certainly not call it "Sir" because he doesn't deserve this award, he doesn't even deserve caps on his name.

On days like this, I want to ensure that the truth is out and that papers and government officials know the truth about simon wessely. He is no hero.

Imagine having a full disease ignored from a dictator who has gained power, somehow, for 25 years? If it had been AIDS, today, this man would be in jail or in a locked psych ward. Perhaps this will be coming in the future. Patient neglect is rampant. And his policies, his papers, his views are directly the cause. That is my opinion.

I was very thankful for Margaret Williams to shed some light on this rather wrongful knighthood. I encourage you to read this important piece to know the truth.