Monday, March 31, 2014

The Canadian government responds with (not-so) sweet nothings.

I am disbelieved that the Canadian government thinks that patients with ME and FM are well taken care of and that we should stop complaining.

For 30 years now since the epidemics in Lake Tahoe and Lyndonville and around the world, patients have been told that this disease is in our heads, that it doesn't exist and that we are not worthy of being researched. 30 %$^&*&* years. Patients have disappeared from circulation. They have become recluses. They have committed suicide. They have stopped existing.

And last week, my Canadian government told me I should be happy with the peanuts they've thrown us, that they have invested 600 000$ for ME research since 2006. For the 411 466 of us.

And while this is happening, the Malasian flight MH370 is lost at sea, air and sea fleets are deployed to search out an entire ocean for a plane and its 240 passengers and crew. Imagine how much the search efforts cost. We are beyond millions by now- hundreds of millions, which has been given out with very little warning, to search for the plane and its occupants. And they mentioned again today in the news they would not give up until they found the plane and have explanations as of what on earth happened to these people and why.

Mr Harper, prime minister, Mrs Ambrose, minister of health, we are lost and we need to be found. We are Canadians. We have paid our taxes. We are mothers, fathers, sisters, brothers, children. We have been left behind for DECADES.

For decades we have been told there is no money for us. All that while, the HIV epidemics has been taken care of, and in fact, there are so much money for HIV research that all the researchers have had no choice but applied for HIV grants.

For decades there has been the belief that ME  and FM patients are malingerers, are faking an illness, that it's all in our heads. The script has been so well learnt that physicians know it as well. They got nothing for us. They are telling us we need cognitive behavioral therapy to learn to ignore our bodies telling us something is definitely wrong, and graded exercise therapy to learn to go back to society.

For decades researchers have learnt that researching ME would be a career suicide. Physicians have been forbidden to be curious and think outside the box. And for decades, patients have been tied to their beds, too sick to speak up.

In the meantime, scientists have done research on the side. Some of them could not even publish, because journals don't want to publish that stuff. There is so much stigma. And evidence that indeed something is wrong with our immune system, our nervous system, our mitochondrias and much more is still surfacing. All that while, my canadian government refuse to collaborate, research, fund ME and FM research. All that while, my canadian government refused to look at the statistics from the Canadian Community Health Survey that counted 200 000 of us in 2001 and 411 466 in 2010, and puts this disease in the most neglected category.

From the CIHR funding database, I can see that Canada is funding over 260 millions of dollars for HIV research. Meanwhile, if Canada spent 200 000 for research that is strictly for ME it would be a good thing. But of the 2 research grants, one was related to XMRV- a potentially infectious retrovirus that ended up being discredited association with ME and the other research is about RNASE-L, an enzyme that is lacking in several different diseases, and this grants does not specifically research ME. Essentially, Canada funds 1 000 000 times more HIV than ME which affects  411 466 patients in Canada.

The level of stigma and neglect at the government level as in society for diseases like ME and FM is unbelievable. You do not know what you are facing, until you get sick with it. Very few understand what it's like. By turning your backs on the diseases makes it more painful. It is not unlike the way patients with MS have been treated in the past before imaging was advanced enough they could see the lesions in the brain. Before that, patients, mostly women, were deemed 'hysterical', diagnosed with hysterical paralysis and hospitalized in mental hospital. And up to 1991, it was believed that type A personalities was the cause of stomach ulcers and that sufferers had to undertake psychotherapy and relax a bit. These days, stomach ulcers is easily diagnosed and treated with a simple round of antibiotics.

What have we learned from diseases that were so stigmatized in the past, epilepsy, Parkinsons, once more, MS and the HIV epidemics? We have learnt that funding for research helps a whole lot in understanding the disease and the quality of life of its sufferers.

And what I am learning from having this disease, is that name matters. for 25 years this diseases has been called chronic fatigue syndrome, as ordered by the CDC to minimize the seriousness of the illness. And it's succeeded in making it dead last in the list of priority for funding all around the world. Compared chronic fatigue syndrome to its original name, myalgic encephalomyelitis, which makes neurologist very nervous because all of a sudden it sounds just terrible and it could not be possible that it's such a serious disease.

So while you are waiting for the CDC to decide whether it is a serious illness, I am asking you, Mr Harper, Mrs Ambrose, how convenient is it that my disease is called chronic fatigue syndrome and that by the way, everybody is at least a little tired from their busy life. How convenient is it for the CDC to keep this disease in the shadows, poorly defined  and not deemed serious? How convenient is it that no medical specialty wants to touch us patients with a stick, because this is what's happening out there.

411 466 patients in Canada are very seriously ill, and 25% if not more is housebound or bed bound and waiting.

Here are the answers of Order Paper #244
The official response  (for people with cognitive issues like patients with ME and FM this format is torture)

Extracted questions and answers

These are in my opinion is non- answers. It's insulting. It's outrageous. Please try harder. Please ask Dr Hani El-Gabalawy and Mrs Liz Sterling from the Canadian Institutes for Health Research, Musculo-skelettal health and arthritis Institute about what they have learnt from their 5 days conference in San Francisco this last week.

Engage with patients. Ask them what it's like to live with these diseases and how they have been treated by their health care system which should be free.

Engage with the physicians. Ask them what they know about ME and FM. Ask them to assign ME to a medical specialty and that psychiatry is not one of them.  Patients not belonging to a medical specialty leaves us to a family dr who has no time nor energy to learn about a complicated diseases, and most of whom have no clue what natural killer cell function is.

Research stigma in ME and FM. Engage with the scholar and ask them to research stigma as it applies to ME and FM. Do not leave the housebound and bed bound behind. They have stories to tell too.

Assign 10 millions of research per year for 10 years and see how far we'll go with that. Use very curious researchers, such as Michael Houghton or David Patrick. Use the Canadian Consensus Criteria to define your patient cohort. Search blood, tissues, and body fluids, and use the latest technologies. It's not that hard.

We are the passengers on MH370. Missing for the last 30 years. Please find us.

Sunday, March 23, 2014

Open letter to the Canadian Institutes for Health Research

The following is an open letter to the Canadian Institute for musculo-skelettal health and arthritis, and the 2 delegates which attended both the Stanford ME conference and the IACFSME conference.

Dr El-Gabalawy and Mrs Stirling

I would like to thank you for attending both the Stanford and the IACFSME conference in San Francisco this week. 

I hope you are just begining to understand the stigma surrounding ME and FM in society, in health care, in research and amongst government entities. It has now been 30 years since Lake Tahoe and Lyndonville, NY epidemics, and not only patients have remained sick, they have for the most part been ridiculized and denied health care. Some patients could no longer wait and committed suicide and yes this happens in Canada too. 

Personally I got sick at age 39, 51/2 years ago when a patient sent saliva straight to my mouth while talking, and I contracted EBV. It was the last few weeks I worked as a RN. This disease disables, and takes us away from our lives. It is not about being tired.  I loved my job and spent my holidays cycling the world. These days I cannot walk a block. 

What patients like me need is a health care system which does not discriminates. We need our disease recognized within a medical specialty, so it can be treated with as much respect as HIV or cancer or rheumatoid arthritis. We need biomedical research and access to drugs that could have a likelihood to help. I have had Rituximab in the past 2 years, sadly it didn't work for me. I am now been started on Valgancyclovir. i am very thankful for my California physician for offering these treatment modalities for me and other patients he sees. 

I am very distressed that my canadian health care system cannot even comprehend what kind of care I need. Having been an oncology nurse, I know what is evidence-based treatment and I know how funding directly impacts the health of patients. Patients with ME and FM have clearly been left behind. The earlier this is recognized within the Canadian government, the faster it can translate into research, treatments and recovery for these patients. 

Patient engagement is a very popular concept at the moment. I have great hope that you can engage all patients in moving the ME and FM agenda forward in Canada. 

Lastly, meditation, CBT, and graded exercise therapy are just as effective for HIV patients as for patients with ME.  (However you will note that these treatment modalities are not known to reduce their viral loads) These are certainly not treatments and research funds would be best used for science, like immunology, neurology, and such. Self-help therapies have taken us so far, patients all know about them, and patients already know what a healthy diet means for them. We need hard research. Canada needs to engage and participate in international research. 

Sincerely, Kati Debelic, former RN, sick for 5.5 years
Port Moody, BC

Saturday, March 22, 2014

Order Paper #244 answers due on March 24th 2014

In Canada, the way to ask the government questions at the House of Commons is through asking a member to Parliament to ask them. 

We've been lucky in Dr Hedy Fry to ask these questions on our behalf. 
This time around the questions are thorough and brilliant. They ask the right questions. Hopefully our government will come with satisfactory answers. 

The responses are due this coming Monday. I am not sure whether they will be provided orally or in written, but I will make sure to update as soon as I know. 

For the time being here they are below. The answers are coming. I am only hope that they are not stranded trying to mask the fact that they don't have these answers. Will keep you posted. 

There are 411466 of us patients with ME in Canada which have access to very little care, if any atall and what is offered is inappropriate and appalling

Q-2442 — January 28, 2014 — Ms. Fry (Vancouver Centre) — With regard to Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS):
 (a) how much money has the Canadian Institute for Health Research (CIHR) invested and/or allocated into researching ME/CFS in 2012-2013 and 2013-2014, specifically into:
(i) the aetiology,
(ii) diagnostic markers,
(iii) pathophysiology,
(iv) treatment of ME/CFS;

(b) how much research has CIHR funded into treating ME/CFS with
(i) Rituximab,
(ii) other autoimmune medications,
(iii) anti-viral medications,
(iv) other medications;

(c) what strategies has CIHR designed and implemented to ensure that ME/CFS research is fairly funded;

(d) what strategies has CIHR designed and implemented to
(i) develop a ME/CFS scientific research community in Canada,
(ii) ensure that the ME/CFS research community is multidisciplinary bringing together immunologists, neurologists, cardiologists, endocrinologists, system biologists, geneticists, etc.;
 (e) has CIHR considered creating a new institute to focus on this emerging area;
(f) has CIHR outlined areas of ME/CFS research as priorities for funding, and designating a specific amount of money for ME/CFS research, and if so, how much;

(g) will CIHR amend the grant application process to remove the barriers for new and stigmatized conditions to ensure that ME/CFS as an emerging area of research has a fair chance of being funded;

(h) how has the government, including
(i) Health Canada (HC),
(ii) CIHR,
(iii) Public Health Agency of Canada (PHAC),
(iv) Employment and Social Development Canada (ESDC), (v) Statistics Canada (StatCan),
(vi) Department of Justice Canada (JUS),
(vii) Treasury Board of Canada Secretariat (TBS) and
(viii) Canada Revenue Agency (CRA) educated itself on ME/CFS;

(i) did representatives from
(i) HC,
(ii) CIHR,
(iii) PHAC attend or will they be attending
(1) the Invest in ME International Conferences,
(2) the Biennial International Association for CFS/ME Conference in Ottawa in 2011,
 (3) 2014 Stanford University ME/CFS Symposium on March 19, 2014,
(4) the Biennial International Association for CFS/ME Conference co-hosted by Stanford University from March 20-23, 2014;

(j) to what extent has the government, including
(i) HC,
(ii) CIHR,
 (iii) PHAC,
 (iv) ESDC,
(v) StatCan,
(vi) JUS,
(vii) TBS and
(viii) CRA, fulfilled its obligation under the UN Convention on Rights of Persons with Disabilities (article 4.3) to closely consult with and actively involve people with ME/CFS through their representative organizations, notably the National ME/FM Action Network;

(k) when will
(i) the Minister of Health,
(ii) Health Canada
(iii) CIHR,
(iv) PHAC,
(v) ESDC,
(vi) StatCan,
(vii) JUS,
(viii) TBS,
(ix) CRA next meet with the National ME/FM Action Network;
 (l) when will foundational documents, notably
(i) CFS/ME: A Primer for Clinical Practitioners,
(ii) Profile and Impact of 23 Chronic Conditions in the 2005 Canadian Community Health Survey, be posted on government information websites in English and French;

(m) how is the government working with the provinces, territories, professional organizations, educational institutions and other stakeholders to meet the needs of Canadians with ME/CFS;

(n) what steps has the government taken to ensure that ME/CFS patients in its jurisdiction have access to appropriate medical care;

(o) how many medical professionals in Canada including
(i) doctors and (ii) nurses currently specialize in ME/CFS and how is the Health Human Resources Strategy ensuring that there will be an adequate supply of health providers specializing in ME/CFS in Canada in the future; 
(p) how is the Health Care Policy Contribution Program being used to improve health care for ME/CFS patients;

(q) how is the government working with stakeholders to deal with other needs of Canadians with ME/CFS shown by the 2005 and 2010 Canadian Community Health Survey (CCHS) including
(i) reducing the levels of unmet home care needs,
(ii) reducing the levels of food insecurity, and
(iii) increasing the sense of community belonging experienced by Canadians with this condition;

(r) why has the CCHS decided to only monitor the extent and impact of ME/CFS, every four years;
(s) will the government review disability programs and services to ensure that they cover the full spectrum of disabilities so that people with ME/CFS have fair and equitable access and will the government review the information and documents it disseminates to ensure that ME/CFS issues are presented adequately and fairly;
(t) when will the Canada Pension Plan-Disability Adjudication Tool that guides adjudicators in their assessment of ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities and Chronic Pain cases be reviewed in conjunction with the stakeholder communities to ensure that people with the conditions have fair and equal access to Canada Pension Plan-Disability; and
(u) when will the Canada Pension Plan-Disability Adjudication Tool that guides adjudicators in their assessment of ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities and Chronic Pain cases be posted on government websites?

Thursday, March 20, 2014

How to make a disease disappear

It is overdue, I need to reopen this blog and speak up. Here is an opinion editorial by Craig Mp presented today as the Biennal (or make it 3) International ME Conference began today in San Francisco. Craig posted this on an international mailing list called Co-Cure.

If you are new to the disease and it doesn't seem believable, it's because it isn't. It's totally unbelievable, but it's true. There are millions of us sick, living as recluse, rejected by the health care systems. And while just a handful of physicians actually believe us patients that we are indeed very sick, the rest of them physicians do not believe it's a real disease, or they believe that it should be treated with anti-depressants, cognitive behavioral therapy and graded exercise therapy. The abandonment of a disease is still going on, 30 years after the well documented epidemics.

And I will be back soon. Canadian content: Health Canada and Public Health Agency still denies there is a problem- seemingly they are turning to the CDC when it comes to what to do- and we all know where that leads. I have lots to say. Like I said I will be back soon.

(pardon the formatting) 

Here is Craig's piece.

The following is an op/ed candid discussion between Stephen Straus and Keiji
Fukuda. The letter discussed in this op/ed is linked at the bottom of the
webpage – freely available to all.
Feel free to post or distribute anything to blogs and forums.

CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct
Illness "Evaporate”.

(CFS Report Op/Ed, March 2014) -- Craig Maupin

In recent months, efforts to redefine chronic fatigue syndrome
(CFS) have come under much scrutiny. The attention on the new definition
should come as no surprise. Definitions and labels can be abused to direct
research and clinical outcomes toward personal beliefs of authors. In the
case of CFS, it has been easy, and perhaps necessary, for the DHHS to
dismiss such past problems as unfounded speculation.
The truth is far more complex. In a document obtained by
the CFS Report (see links below), Stephen E. Straus, widely known as the
creator of the “fatigue syndrome” concept, discussed his hopes for 1994
redefinition of CFS with the CDC's Keiji Fukuda. The Straus/Fukuda letter,
written after the submission of the new definition for publication, is
frank. Straus predicts the new definition would cause “the notion of a
discrete fatigue illness” to “evaporate”. Once a concept of a distinct
disease evaporates, Straus claims a framework of idiopathic fatigue -- a
symptom that falls short of a distinct disease -- would be left behind.
Straus predicts the new definition may lead to the “entire abandonment” of
CFS. It is a strange prediction, to champion a definition that leads to
the future abandonment, evaporation, and discreditation of that which one
claims to want to define.
More remarkably, many attributions and beliefs in the Straus/Fukuda
letter can be seen current NIH peer review policies, conferences, and
RFAs. Straus was often known to research on immunological findings in
subsets as CFS as "dubious", while praising researchers/papers focused on
mind-body interaction. Straus also claimed CFS's pathology was "akin to
pain", which has a "locus in the brain". Today, grants for CFS are
reviewed by reviewers who predominantly work in areas related to
hypersensitivity to pain, with scores delivered by reviewers among a group
of pain "oversensitivity" syndromes.
Like the Straus/Fukuda letter, RFAs and funding requests from the
NIH also emphasize the brain and pain, while deemphasizing immunological
findings. No mention of recent CFS research on autoimmunity, B cells, or
antibodies are found NIH funding requests. The current RFA (PAR 12-032)
encourages CFS grant proposals fit seven categories the NIH terms as
applicable to CFS: aging and fatigue (NIA), alcoholism and fatigue
(NIAAA), pelvic pain disorders (NIDCR/NIDDK), NIAID (unspecified, but
immunologic mention seems purged from the current RFA), the brain (NINDS),
behavioral relationships to fatigue (NINR), and mind/body interaction
(NICAM). Terrell Hoffeld, who oversaw CFS peer review seemed to reiterate
attributions in the Straus/Fukuda letter when he told me that CFS had "moved
on" from immunological research, and that relieving pan and anxiety from a
neurological/brain approach was his goal at the CSR. (link)
Straus admits that his integrative "fatigue syndrome" concept is not
seen by some as “worthy of study”. Years later, his words seem eerily
prophetic. Funding support for CFS is among the lowest of categorized
diseases at the NIH.
Straus viewed CFS as predominantly a women's illness (NIH
Publication No. 91-3059). Studies have shown women are less likely to be
viewed as having a disease than a subjective complaint by doctors (Arber
2006). Straus, himself a clinician, suggests to Fukuda that CFS is an
“impression on the part of the patient or physician that such a complaint is
important”. Such attributions seem to represent a traditional mindset
toward women's medical issues. Women are also more likely to be seen as
having their symptoms originate in the brain or from psychological causes
(Hoffman, Tarzian, 2001). Straus displays a disdain for CFS models that
fail to revolve around an unnamed "locus in the brain".
Whether the DHHS acknowledges it or not, attributions seen in the
letter between Straus/Fukuda letter laid much of the foundation for how the
NIH handles emerging illnesses that predominantly affect women, such as
CFS. Conferences sponsored by Drs. Vivian Pinn and Lawrence Tabak for CFS
sought to interfuse pain, the concept of hypersensitivity to symptoms, and
central processing in the brain into efforts to direct scientific research
for CFS. Dr. Eleanor Hanna, constantly reiterated that grant proposals seen
as "bad science" would not be considered fundable by ICs, and her views on
CFS were well known within the ORWH and among Trans-NIH Working Group
members (see link below). When the NIH continually ignores recent findings
on B cells, unique antibodies and immune markers, and autoimmunity in its
conferences, RFAs, and grant reviews; the foundation left by Straus seems
not far behind.
Straus sold the idea within the NIH shortly after CFS was first
defined that negative studies for Epstein-Barre and known virus' had
scientifically disproved a viral or immunological pathology. However, some
past DHHS leaders, such as Donna Dean and Arthur Lawrence have pushed the
HHS to acknowledge hundreds of peer reviewed papers documenting
immunological defects in subsets of CFS. A definition of CFS on the ORWH
website seems to suggest a more distinctive illness than Straus'
definition. Perhaps such efforts suggest that some in the HHS realize
the definition and label created by Straus was never meant to create a
benign search for scientific truth.
This disease possesses clear, distinct, and definable traits
seen in no other illness: severe post-exertional collapse, flu-like
symptoms, and orthostatic intolerance. Unlike many illnesses, the disease
often is preceded by an acute viral infection. Without a definition and
label that puts these distinct and unique symptoms at the forefront, the HHS
is simply striving to cling to one man’s "desired outcome" for the
“evaporation” of a severe disease.
Defining and labeling any illness, if done poorly, can do permanent
damage. Fifty scientific experts know it. The sufferers and
families and of those who suffer from CFS know it. And much of the
scrutiny on the definition of CFS and current efforts of the IOM to revise
the definition for CFS, stem from historical and clear evidence that
personal attributions played a role in the "evaporation" and "abandonment"
of a devastating disease.
CFIDS report

Saturday, April 27, 2013

HAWMC: Dropping out

I just wanted to briefly update this month's challenge. I have dropped out. I couldn't keep up! I am impressed that I stuck to it for so long, considering my level of health and the associated cognitive dysfunction that is associated at the moment.

I mean, what was I thinking?!?

The truth is I want to fight stigma and neglect the hardest I can, I want justice and I want my government to recognize the gaps in the health care system, the huge black hole that patients with myalgic encephalomyelitis have been in for over 30 years now. But it's a big task for one person, and the hill is quite steep. And doing advocacy is impeding on my health.

So with this, I raise the white flag. Beat but not defeated.

Tuesday, April 23, 2013

HAWMC Day 23: What if there was no social media?

Today's prompt: Write about how your life would change if there was no social media

It is hard to imagine that I finished my nursing degree in 1991 without the use of a computer. Reference search for my papers were done the hard way, by going to the library, looking at paper magazines and index cards. It's mind boggling, we have gone a long ways since then.

When I was young, my grand-mother would tell us stories of her life, when they didn't have power, perhaps not running water, I can't remember. Our world keep on evolving, whether we want it or not, and whether we like it or not.

I got sick in November 2008. The internet and social media were well established then, and I quickly joined an online forum when I finally learnt what I really had, 10 months later and what to do to not worsen it.

Then Facebook became the social hang out, and then I used Twitter for advocacy. Social media is commonly accepted, perhaps a necessity for those of us who are housebound and bedbound, but I know very well that some patients can't afford a device, or internet access, or they are too sick to use it.

I have to admit that I suffered "great hardship" when FB blocked me from using my account late last year. It was felt that I was spamming at the time of the offense which was not the case. i have tried many times to recover access to my account to no avail. See, FB doesn't have a customer service. These months being deprived from FB have been difficult even if I was still connected to the internet. Being connected to a community, albeit a virtual one is in my eye essential.

Patients who lived through epidemics of Myalgic Encephalomyelitis in the 1980's did not have internet access. The luckier could actually attend support groups if there were any, and if they knew exactly what they had. The disease history is well documented in "Osler's Web" by Hilary Johnson. Doctors brushed it off as the Yuppie Flu. There was no respect then. not too much more now.

I am thankful for the internet and social media.