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. 

Simon Wessely do not want to answer.

Countess of Mar, a UK member of parliament who has been asking tough questions on behalf of patients with ME in the UK, has been pressing simon wessely to answer this upmost important question.

If you don't know simon wessely, he is a psychiatrist proponent of cognitive behavioral therapy and graded exercise therapy as the sole therapies for patients with ME. However, it is possible that today he would attempt to protect himself and say "you took my words out of context" or something to make him look as the good guy.

simon wessely, however is not the good guy in this story. He has effectively blocked biomedical research from happening in the UK and around the world. He is controlling what information goes to the media and what is gagged from them, notably good biomedical research. He has spread his beliefs, and yes they are beliefs, all around the world, telling our doctors we patients with ME had symptoms of "mass hysteria" (and if you didn't know, hysteria comes from the word uterus) and "false illness beliefs". This has gone on for over 25 years.

So Countess of Mar is asking the tough questions. "In the light of these results, do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?"

And s.w. goes silent. Does not want to answer. Takes long detours. Does not want to answer publicly. And when forced to (to save face)- he still refuses to answer the question, taking a long detour in the country side. Probably he will go cry to the media that he is being bullied by Countess of Mar at first chance he gets, because that's what he does. 

But he's a big boy controlling a lot of strings. 

And patients, they have had enough. Well that was an assumption. I know I have. And I am in Canada. 

As a parallel I am still waiting for the Canadian Health Minister to provide me with an answer of my February 16th 2012's letter (which can be seen here). No comments about my 2400 name petition, and still no response from the Order Paper #1044 which was due on December 15th, but since the government was no longer sitting on Dec. 15th, the response is being delayed until the House of Commons opens for business again mid January. The federal is funding 0$ for research for 411 500 patients with ME/CFS in Canada, and seemingly has no intention to pay attention to us patients with no health care  because simply put, it does nothing for their image to fund such disease. 

So here you go. Returning to simon wessely and Countess of Mar. I am sharing the dialog with the hope not only to entertain you but also to support my belief that s.w. continues to cause great harm to our community of very sick patients. 

Dear Professor Wessely
I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it is not surprising that I regard this belief with something less than amusement.
I wonder whether you recall the time when you were just getting your initial research into Gulf War Illnesses off the ground in mid-1998? I had given evidence to the Royal College of Physicians and Royal College of Psychiatrists Inquiry on Low Level Exposure to Organophosphate Sheep Dip which was published in November 1998. Your colleague, Professor Anthony David, was a member of the inquiry. I recall receiving a letter from you both to the effect that you were sorry that I had had reason to criticise your Gulf War research in the course of my evidence when, in fact I had not mentioned Gulf War research. You also asked to meet me. I recall correcting you on the facts and stated that I had no desire to meet you. I then received a number of telephone calls and letters, both to my office and my home, demanding that I meet you. I have to say that I regarded this as harassment at the time, though I did not see the need to contact the police. Eventually I agreed to accept your invitation to lunch at Gordon's Wine Bar behind Charing Cross Station. 
I brought with me Ms Emily Green, an eminent scientific journalist, with your agreement. I shall never forget being astounded to find that, when we arrived at the appointed time, 12.30 pm, you had arrived early; bought your own lunch, and presented us with a bottle of water. Prior to the meeting you were very firm about the time, as you had patients to see at 2.00 pm. We discussed a number of topics, including whether you knew Elaine Showalter and whether you had ever advised the Department of Social Security on subjects such as ME. Some of your responses we found were economical with the truth to put it mildly. It was very shortly before 3.00 pm that you finally got to the point - you wanted me to help persuade the Gulf War Veterans to complete your questionnaire!
I think you need to understand that this encounter left a rather enduring and nasty taste in my mouth, not least because I had to buy my own lunch when you had invited me to lunch. Neither was I impressed by your deviousness in response to straightforward questions. This caused me to look more deeply into what you were doing and into your associations, most of which are now public knowledge. This, in part, helps to explain why I have reason to criticise some of your work.
I have also attended some of your lectures and have read reports of others. I have heard and read the extraordinary way in which you and some of your colleagues have denigrated people with ME and have tried (and to some extent succeeded) to persuade others that people with ME are not really ill at all; they merely have 'aberrant illness beliefs'. You have deliberately obfuscated the terminology surrounding ME by linking it with chronic fatigue and attempting surreptitiously to reclassify it as a psychological condition under the WHO ICD classifications. In doing this you appear to have totally ignored the first exhortation to doctors - "First do no harm". Yet when this beleaguered population has reason to look at your work critically you deny what you have said and written and plead persecution and harassment from the very people you purport to be helping. I would have thought that any thinking person would ask themselves why this is happening; would ask the individuals who are clearly angry what is angering them, and try to put things right. You are in an exalted position - a Professor of Psychiatry with all sorts of awards. Why on earth do you need to play the victim?
My personal experience with organophosphate poisoning taught me that there are members of the medical profession who are not prepared to "listen to the patient for they will probably tell you the diagnosis". I am fortunate in that I am articulate and determined and I have been put into a position where I can speak for others less fortunate than I am. If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way. 
So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB on 2 November 1993 which was considering those with ME/CFS you said: "Benefits can often make people worse", yet in your letter to Dr Mansell Aylward at the DSS you wrote: "CFS sufferers should be entitled to the full range of benefits". Given that, in 1990 you had written: "A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined ……..in many of them, the usual findings of simulated muscle weakness were present" (Recent advances in Clinical Neurology, 1990, pp 85 - 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME.
I note that you do not hesitate to condemn statements from your critics as "the same old stuff that they have been saying about me for years". People with ME could be equally justified in their belief that you perpetuate the beliefs that you have long held that ME is a psychosocial behavioural problem and that you have totally failed to embrace the vast body of peer reviewed scientific literature that demonstrates damage to neurological, cardiac, endocrine and other systems in people with ME. I believe it was you who recommended that GPs should not indulge patients with too many investigations. This has meant that people with conditions that could have been treated have been misdiagnosed and neglected.
I have spoken strongly in defence of people with ME who have been traduced by you and your colleagues who have embraced the psychosocial behavioural model. I am not ashamed of having done so for they have few who will defend them publicly. The scientific evidence is heavily weighted against ME being 'all in the mind' so, by deduction it must be the economic argument that prevails, to the disadvantage of the estimated 250,000 people who have ME. have you ever considered the savings to the exchequer and to the insurance industry if people with ME were properly investigated and treated so that they could return to work or education? 
I take no pleasure in asking "bogus" questions and making speeches in the Lords. I would very much sooner your profession got its act together and spent some time studying the real effects of ME on patients and looking for solutions. We all recognise that chronic illness, whatever it may be, presents with psychological aspects. CBT can only be a management tool and GET reportedly does more harm than good for patients with ME/CFS as opposed to chronic fatigue. 
Patients must be able to trust doctors and scientists. You have betrayed this trust. A scientist should be able to accept honest criticism. You have misconstrued criticism and turned it into harassment. You have much to answer for, so it ill behoves you to employ diversionary tactics in an attempt to portray yourself as the injured party.
I have written this as an open letter because so much of this debate has been in the open. It would be helpful if you would make your position with regard to people with ME/CFS utterly clear. Do you still believe the ME/CFS is "perpetuated by dysfunctional beliefs and coping behaviours" as you wrote in your 2002 CBT Manual for Therapists? If you do, please will you explain why no one got better with your model. If you do not, would it not be sensible for you to withdraw it instead of continuing to make the facts fit your theories as they appear to have been in the PACE statistics where you were in charge of the Clinical Trial Unit.
I look forward to hearing from you.
Yours sincerely
Countess of Mar

Exhibit 1: December 4th simon to Countess, and Countess back to simon

Exhibit 2: December 12th Countess to simon

Then simon answers, and the Countess replies:

From SW 12 Dec 2012

Dear Lady Mar
May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet?
When you wrote to me, you said it was an “open letter”, and indeed, it appeared on the internet as you sent it me
Personally, I don’t particularly like that way of communicating. If I write to a newspaper, or have a paper in a journal, then clearly that is public. But if I write to a private individual, then that is private, unless I indicate otherwise (as you did in your letter to me) or the other person asks for permission to repost, I think the word is.
So if we are to pursue this, can I first of all establish what is the basis of our correspondence. Is it private, or is it public? I can cope with either, but I think it’s only fair to both of us to establish which it is.
Simon Wessely

From: MAR, Countess
Sent: 12 December 2012 17:12
To: 'Wessely, Simon'
Subject: RE: My letter of 5 December 2012
Dear Professor Wessely
Thank you for responding to my letter of 12 December 2012.
As this correspondence began with an open letter I believe that it should continue as such. Unless you can give very good reasons why it should not, I can see no reason why your private response should be any different from your public response. Your answer to my question should be the same to whomever you reply.
Much of this debate has been conducted in the public arena, but a public arena from which people with ME/CFS are largely excluded. I am sure that you are aware that they do not have the same access to press, radio and television as you do. As we are concerned with their health, they should be privy to your honest opinion. Do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?
I still look forward to your reply.
Yours sincerely
Mar

Exhibit 3: simon to Countess of Mar and Countess of Mar answers: December 17th

More of wessely's words here, here and the lovely piece by Margaret Williams called "wessely is misunderstood"

And I go on, and on, and on. There is so much more to say. I will try to update as more conversations come, if they come. 

Member of Parliament issues ME Order Paper

Liberal MP Carolyn Bennett has issued an Order Paper last week on behalf of patients with ME.

An Order Paper is one of the ways for a member of parliament to ask questions to the Canadian government, and by law, the government has to respond within 45 days.

Here is another way to explain it, coming from the office of Carolyn Bennett:

If a question intended to obtain information from the Ministry involves a lengthy, detailed or technical response, a written question must be placed on the Order Paper. A Member must give 48 hours' written notice of his or her intention to submit such a question. Each Member may have a maximum of four questions on the Order Paper at any one time. Certain restrictions exist on the form and content of written questions. These are based on the Standing Orders and on practice.

The Member giving notice of a written question may request an answer within 45 days and may also ask that oral answers be provided to no more than three of his or her questions on the Order Paper. Such questions are identified with an asterisk in the Order Paper.

The House must be sitting so we will not be able to do so until the House resumes in the fall.

St-Pauls' Liberal MP has been briefed about the situation of almost half a million Canadians,and quickly decided to pass on to action. We the patients in Canada can only be thankful for her gesture.

It is not the first time questions were asked at the House of Commons about ME. In 2009 there was an Order Paper placed by Hon Oliphant and the answered on October 5th. The questions this time are fairly similar, which inadvertantly makes you think that the Conservative government doesn't care about us. Funds have not been allocated, consensus documents have not been approved to be posted on national public health website and that the arthritis research had us covered (insert swear word here).

Carolyn Bennett is a physician who gave up her practice to be a full time politician. She is a well seasoned politician, sits with the liberals and currently is a critic for Aboriginal Affairs & Northern Development and the Canadian Northern Economic Development Agency. She is also Chair of the National Liberal Women’s Caucus. Despite her very busy schedule, she is giving of her time with her constituents and also anybody else who wants to chat with her on Sunday evenings on Facebook. This is how I got the opportunity to approach her in regards to myalgic encephalomyelitis and fibromyalgia, one of the most neglected diseases of them all. On many occasions she asked me to send documents and links to her office. She has been interested and it's nice to see.

For those of you not knowledgeable with the Canadian politics, the Conservatives have been elected for a second term, this time with majority. It is my opinion that they have not been doing a good job in general- especially when it comes to health and science. (And of course I am concerned about health)

So on October 30th Carolyn Bennett filed an Order Paper on behalf of patients with Myalgic Encephalomyelitis and Fibromyalgia. And I want to say thank you. Here are the questions she has been asking:

It is Question 1044 and available in both official languages here

Q-1044² — October 30, 2012 — Ms. Bennett (St. Paul's) — 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?

We should have an answer by mid December.

Tell the FDA to find drugs for ME

I hear the FDA is looking for advice from the general public as of which disease needs special attention, and which disease deserves drug development done. This represents a rare opportunity for patients with ME to address the FDA and let them know what it's like to live with this damn illness, what kind of care we are getting around the world, how many of us are sick, and what needs to be done.

So tonight I am taking a few minutes to write to the FDA and letting them know how the life of millions of patients around the earth has been halted by this shitty disease and how we have been neglected and failed by our governments and health care systems.

I am inviting other patients to do the same, regardless on how sick they are. This is too important to hope that someone else will do it for you.

To whom it may  concern.

4 years ago I got suddenly ill with a sudden onset of mononucleosis, with documented EBV infection. I never recovered. In fact when I was expected to recover, instead I found myself very sick with a necrotic gallbladder, in hospital for 2 weeks. When I was expected to recover from the gallbladder, instead I went further downhill and started having photophobia and symptoms of what I would later learn was POTS (Postural Orthostatic Tachycardia Syndrome). My GP thought I was depressed and had "chronic fatigue" so she insisted I needed anti-depressants.

In fact the disease I have is called myalgic encephalomyelitis, aka "chronic fatigue syndrome". I am at a loss when I have to say these 3 words because I know I will get stigmatized and labelled as a faker, and I must not be that sick after all if I have "chronic fatigue" - Please, no more of the CFS words- it is insulting and minimizing the illness that took away my life, my work, my hobbies and my future.

I can no longer work, I was a registered RN. I can no longer travel, I loved to travel from the viewpoint of my bike. I have seen the Alps, New Zealand and even biked across Canada. I can no longer do what I love. I am too sick. Most of my days are spent in bed. I can barely go out and buy myself groceries. I cannot read a book, it is too demanding cognitively.

There are just a few physicians around the world who have been brave enough to study us and to see us as being physically ill. So many papers prove that we have a discrete illness, with profound immune activation, viral reactivation, mitochondria dysfunction and autonomic nervous system dysregulation. Spect scans  and MRI are abnormal, brain blood flow is abnormal and spinal fluid shows again abnormalities.

However there is also a part of medicine who is determined to fail us the patients, maintaining we have had childhood abuse and that we have false illness beliefs. The psychiatrists disseminate poorly conducted studies throughout the media and medical journals saying that we need cognitive behavioral therapy and graded exercise therapy. This propaganda is what has prevented medicine and all governments  from helping us and researching us properly. These psychiatrists have huge conflicts of interest and links with insurance companies.

In Canada, we have a chronic diseases survey each year which estimates the number of patients for each diseases. One single question has been asked in 2001, 2005 and 2010 about our disease and it is: "Do you have CFS?" Patients need only answer if they have been diagnosed by a medical doctor. In 2001, it was estimated at around 200 000 patients. In 2010, there was a 205% increase to 411 500 patients. And yet, my canadian government is doing nothing about this inconvenient problem. 0 research. I strongly suspect that the canadians, just like the norwegians, the germans and the rest of the world is waiting to see what the US will do.

Respect for a disease comes with sound research and with sound drugs. Take the example of HIV/AIDS for instance. How much grounds has been covered from 1982 to 2012? How much money has been spent on the way to get there? From a gay disease to a world wide public health concern, so much ground has been covered.

Let's take another disease, multiple sclerosis. In the 1970's patients were said to have "hysterical paralysis" and hospitalized in psychiatry. We are not quite there yet in terms of treatment, but this disease is now getting the respect it deserves.

Patients with Myalgic Encephalomyelitis (CFS)  have waited for decades to get health care. They have lost homes, jobs, families, and have given up getting competent health care all around the world. And honestly they are too sick to block a bridge and scream injustice. Moreover, many of our own have given up and taken their own lives, because they did not see hope for change.

Today I am asking you to pay attention to our disease. Millions are affected and in fact Dr Nancy Klimas, one of the expert in the field, mentioned that 80% are not even diagnosed. It is time that drug development happens, especially as it relates to immunology. Please reject any research about psycho stimulants, we are not tired, we are sick! Low Natural Killer Cell function needs to be considered as a viable biomarker of the disease and there should also be some consideration made on the gene activation after exercise which does not occur in healthy controls or fibromalgia patients (Light study, University of Utah).

I am asking you to recruit help from our experts, namely Nancy Klimas, Dan Peterson, Jose Montoya, Sonia Marshall, Andreas Kogelnik, and the like. We need clinical trials with Rituximab and we need drugs approved- Ampligen which has been sitting in phase 3 for decades. We need more drugs developed, trialed and used. Patients with ME can no longer be abandoned and left for dead.

Thank you, Kati Debelic.
Currently on Rituximab

My CFSAC testimony

Note: CFSAC stands for Chronic Fatigue Syndrome Advisory Committee and is a US federal advisory committee that sends recommendations to the Secretary of Health Mrs Sebelius who acts on behalf of the President. There are 2 meetings a year and patients can send testimonies, and even speak to these meetings.

Here is my testimony:

CFSAC testimony October 2012

Hi, my name is Kati

I am 43 and live with ME for almost 4 years now. I am Canadian.

I have watched the CFSAC proceedings for 3 years now. I have been advocating for health care in my own country for a while also. My own government is not answering my letters.

In Canada we have a “Community Health Survey”- which is a questionnaire about chronic diseases sent every year to a number of Canadians, and then statistics are made to generalize their findings about the whole country.

Questions pertaining to CFS (that's how they call it) do not happen every year. A single question has been asked in 2001, 2005 and 2010 and is asked this way: Do you have CFS? (they require that they are diagnosed by a medical doctor in order to answer yes).

In 2001, they estimated 200 000 patients with CFS.

In 2010 there were 411 500, 24% more than in 2005 and 205% more than in 2001. And by the way the Canadian government is funding 0$ for ME/CFS and what totals to 6 cents per patient per year over the last 10 years. Less than peanuts.

Granted, we are not quite sure what it means. Are these chronically tired people? Are these genuine ME patients with post exertional neuro-immune exhaustion? Are these people getting the care they need? We don't know. My best guess is not many people get care for their disease here, as there are no current treating clinics. There are a few sympathetic physicians, but no testing available, and certainly no canadian is getting medical treatment like anti-viral therapy or Rituximab for instance.

I have sent a letter to the Canadian health minister, Leona Aglukkaq, and asked about what they were planning to do about this raise in number of patients? No answer. My best bet is they are waiting to see what the statistics will say in 2014, the next time a question will be asked in the Community Health Survey, as it pertains to “CFS”

You see, Canada is waiting to see what the US will do. And this is you. Other countries are also waiting. Norway, Sweden, Germany, Australia, maybe even UK. I wonder if this was the case in 1982 with the HIV/AIDS outbreak?

Most of the current ME research that is conducted is not funded by governments. Why? (I will take on this opportunity here to thank the Hutchins family for giving out 10 millions for research this last year.)

The thing is, I think the US government is also waiting to see if something is going to emerge. What I hear from our own experts, the only ones that dare caring for us is not to expect any research funding from the NIH- why? Our experts need financial support. They are the ones that know best how to conduct a study in people with ME, how to select a good cohort and how to avoid pittfalls that so many have fallen into, namely the CDC. (The idea that if the root cause of an illness is not known, then it must be psychological has got to go). There is 1-4 millions of sick patients in the US, more deployed and non-deployed veterans with similar illness, then the case of Lyme disease which has so many overlapping symptoms that it's very difficult to tell them apart. All these people are marginalized, denied benefits, denied a good life, due to governments who do not want to research them. Billions is spent to HIV and cancer, both of which get support from politicians. What would be 1 percent cut in both diseases? A drop in the bucket for them, diamonds for us.

And what about us? We are people too.

We hear that the CDC is turning around, following the Bill Reeves empire, after years and millions of misused funds. I don't think that I am lying if I said that the patient community is very very guarded about the CDC. Patients need proofs that they are willing to do the right thing, show goodwill and burn the toolkit as suggested at the last CFSAC.

Could it be because what happens in the UK matters more than doing the right thing? We the patients all know what is going on in the UK. Simon Wessely is still alive. He has friends, Peter White, Trudi Chalder, Anhony Cleares, and the rest of them psychiatrists who have ties with the insurance industry.

Every time a psych paper gets published, childhood abuse, unmotivated fatigued patients, and all, well it gets picked up by the media all around the globe. It's called propaganda. A biomedical paper as it pertains to ME would not attract such media attention, perhaps except the Lipkin study finally de-discovering XMRV.

It is time that governments around the world start saying no to these psychiatrists who want to rule what is a psych illness if patients have a disease called ME or CFS- It is time that governments take on our side, and fund sound biomedical research. Psychiatrists have said before that Multiple Sclerosis was “hysterical paralysis” and that stomach ulcers were due to “type A personnality”. Everyone would agree that they were wrong. Patients with ME have been ill since epidemics, and even before. No one has been able to think themselves back to health.

My own provincial government is posting health information about ME which has ties from the UK psych lobby. Their reference takes me to www.clinicalevidence.com. It tells everyone who look it up that CBT and GET are the only clinically proven therapies. And who reviews this? Simon Wessely and co.

You see, all of the countries have the capacity to do something really meaningful for patients with ME/CFS- only they have got to stop and wait until someone else does the work.

This has got to stop. It is abuse, neglect and disrespect. Patients have said it over and over throughout the years at CFSAC. We are worth more than peanuts.

Thank you.

Kati

P.S. I have to say that I am concerned that no recognizable name sit on the CFSAC panel- other than Mary-Ann Fletcher. Why are our physicians and known scientists not bothering sitting on such committee, and is the well being of the patients really well represented if these panel member know nothing about ME/CFS or do not treat it? I am worried.  

Bio-medical research for ME/CFS

Recently a canadian politician, Carolyn Bennett, MP in the Toronto area, asked me what was going on in the ME/CFS research world, south of the border. Dr Bennett is a medical doctor, who has moved on to the political world. She is part of the opposition in the House of Commons and has been giving of her time for her constituents, notably being in a Facebook chat every week to whoever wants to talk to her.

I wanted to talk to her. I have things to say about health care, health research as it pertains to Canada. I want to understand the politics, and I want to help politicians understand the situation of 411 500 of us stuck with ME/CFS.

So when, after a few weeks of exchanging chats, she asked me what was going on in research, I saw it as an opportunity.

Here is what I wrote. It came mostly by memory. I think I covered the essentials, though some will think I don't have the name of the disease right (always a contentious topic), or I don't have the doctors right. I gave her a tour of the specialists who have been active recently in the field of ME, and I mentioned the work worthy of mentioning. Feel free to use this work for advocacy purposes.

Hello Carolyn. As promised, here is a "brief" explanation of what is going on in research in the US and around the world for ME/CFS research (myalgic encephalomyelitis aka chronic fatigue syndrome). By all means it is not exhaustive but it is the essential of what is currently going on.

1) A paper by prominent virologist Ian Lipkin is due to publish On September 18th. It is about the association of ME/CFS with retrovirus XMRV and/or polytropic murine leukemia virus.

2) CFI- stands for Chronic Fatigue Initiative. A private benefactor gave 10 millions $ for ME/CFS research last year, and this money is being used for various projects including epidemiology, biomarkers, case definition, etc. More info: http://cfinitiative.org/Dr Klimas, immunologist in Miami Florida is deeply involved with these projects. She has dedicated most of her career to patients with ME/CFS. She tests pts' Natural Killer cell function which is always very low for us. (testing which is not done in Canada) NK cell function btw is also low in HIV/AIDS patients.

3) Dr Dan Peterson: Is an Internist in Incline Village, Nevada (Tahoe) where an epidemic of ME/CFS started in 1984. Dr Peterson Founded Simmaron Research and he has collected thousands of blood and CSF samples of patients with ME/CFS. An abnormally high number of his original cohort went on to have rare lymphomas, notably mantle cell lymphoma. He treats patients with various anti-virals and also Ampligen, a drug that has been stuck in clinical trials for decades.He works with Open Medicine Institute and Phanu (Australia) with genetic and immunology projects. http://simmaronresearch.com/

4) Dr David Bell from Lyndonville NY is also another internist in a small town in NYC where there was an outbreak of ME/CFS in children inthe 1980's. These outbreaks were deemed "hysterical" by the CDC btw. Dr Bell is now retired but has a website with many valuable tools and stories. http://www.davidsbell.com/

5) Open Medicine Institute (Dr Andy Kogelnik) Dr Kogelnik is an infectious medicine dr who is currently preparing multi-center clinical trials with Rituximab for patients with ME/CFS following the work of Dr Fluge and Mella in Norway. Open Medicine Institute is located in the Silicon Valley and this dr has been gathering the gems of all scientists in genomics, computational biology, system biology, social networking and more and building on. Dr Kogelnik previously worked under Dr Montoya (below) with the Valcyte study. The research is starting, however federal funding is very difficult, I believe he will ask patients and the private sector to fund his research. He is collaborating with the CDC on an epidemiology study amongst other things.
www.openmedicineinstitute.org

6) Dr Montoya (Stanford University) is also an infectious disease dr. He is famous for his Valcyte study on patients with ME/CFS. He proved that Herpes virus IgG titers could be reduced by giving Valcyte. Patients with ME/CFS most often have viral reactivtion, especially EBV, HHV-6 and CMV. Viral titers are not done in Canada unless you have HIV. Personally I have chronically reactivated EBV. I also have developped bilateral shingles on the feet which drs couldn't believe could happen. Dr Montoya has a very informative lecture on you tube: http://www.youtube.com/watch?v=Riybtt6SChU&feature=youtube_gdata_player and his website informs about what he is up to these days: http://chronicfatigue.stanford.edu/ He is very active in research and patients from the Bay area are constantly recruited.

7) Dr Bateman (Salt Lake City) has been doing a lot of CME work. She is a GP specializing in ME/CFS. She collaborates with Dr Light who has proven that ME/CFS and depression were 2 separate entities. His stunning paper maybe of interest to you: http://www.jpain.org/article/S1526-5900(09)00574-4/abstract and here: http://www.cfids.org/cfidslink/2009/080503.asp
Dr Bateman's work can be seenhere : http://www.medscape.org/viewarticle/759095

8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. www.iacfsme.org It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here: http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx

9) PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk/Dr Don Staines are doing ground-breaking research on autoimmunity as it pertains to ME/CFS, including research on the NK cells. They recently presented at a conference in London called "Invest in ME"- they collaborate with Dr Kogelnik, Peterson and Dr Klimas in Miami.

Immunological abnormalities as potential biomarkers in chronic Fatigue Syndrome/Myalgic Encephalomyelitis. http://www.translational-medicine.com/content/9/1/81

10) Invest in ME- is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
Their goal is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Please view their journal http://investinme.org/InfoCentre%20-%20Journal%20of%20IiME.htm

And video conference (much recommended) can be ordered for 30$ http://investinme.org/InfoCentre%20Education%20Homepage.htm

11) Recent papers of interest:

A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

Lyme disease is another neglected disease which leaves patients Without ressources or health care in Canada. This fascinating paper shows they are differnet diseases with overlap.

B) VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. Med. Sci. Sports. Exerc. 38(5), 2006.

The work of Staci Stevens and Christopher Snell Has been critical in proving that indeed I was sick and disabled. Using consecutive days cardiopulmonary exercise tests, patients with CFs cannot reproduce results on the second day, which features the "post exertional phenomenon" of our illness.

http://www.research1st.com/2011/11/18/pfl-testing/ Obtaining disability insurance is critical for us amd very difficult to get since insurance companies like to think this is all in our heads and there are no biomarkers. Well in Canada, there aren't. this has to stop.

C) The Rituximab paper. http://www.ncbi.nlm.nih.gov/pubmed/22039471
an important story that has to be told. The same researchers will try Rheumatologic drug Enbrel on the patients who have not responed to Rituximab.

It is to note that I have written to 14 different rheumatologists in Canada asking them to participate in multi-center trials with Rituximab or give it to me as compassionate access. Suffice to say that rheumatologists do not want to get involved in the care of pts with ME/CFS.

D) Impaired cardiac function in Chronic fatigue syndrome measured using Magnetic Resonnance Cardiac tagging.http://www.ncbi.nlm.nih.gov/pubmed/21793948 More proof we are really sick.

Finally, all these efforts are being counteracted by a powerful lobby of UK psychiatrists with vested interests with governments and insurance companies telling our doctors, the CDC and our insurance companies that our disease is due to abuse as a child, that it is treated with CBT (cognitive behavioral therapy) and GET ( graded exercise therapy). This same group of physicians in fact came to Vancouver in the mid 1990's and told our dr we had "false illness beliefs" effectively closing a clinic held by Dr Carruthers. Following this, one of our long time patient mentioned there were many suicides.
Flawed psychological studies are being published by these psychiatrists, and allowed to circulate in the papers like propaganda.

In Canada, very few physicians treat ME/CFS or help with disability insurance.

1) Dr Alison Bested is leaving her practice in Toronto and accepted a position of medical director at the Complex Chronic Diseases in Vancouer, a 2 millions funded by BC- covering mostly Lyme, ME/CFS and Fibromyalgia. She will start October 1st, and the clinic has not opened yet.

2) Dr Ellie Stein, Calgary, psychiatrist who can assure that this illness is not psychiatric in nature, though depression can be rampant due to the extreme neglect. http://eleanorsteinmd.ca/
she just published in the Canadian Journal of CME. 

3) Dr Bruce Carruthers, Vancouver, internal medicine, has had a very very long carreer. He is the authors of 2 definition papers
http://www.cfids-cab.org/MESA/ccpccd.pdf
And this new ME ICC consensus: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full worthy of your time.

4) Dr Byron Hyde http://www.nightingale.ca/ is in private practice, offering careful diagnosis and legal proof of disability.

5) Dr Gordon Broderick is a scientist (computational biology) working in Alberta and collaborating with Dr Nancy Klimas in Miami.

I hope that these can be of assistance to you. Again, there is 0$ federal research for ME/CFS, the Community Health Survey 2010 shows 411 500 of us are affected, 205% more than in 2001. Mrs Aglukkaq has failed to respond adequately to my letters.