My CFSAC Testimony

It's been ages I have posted here.

Some disturbing news have come- with WPI and Dr Mikovits going their own ways.
Then some exciting news with the Rituximab paper. More on that later- if I have it in me.

Yesterday and today was CFSAC time, a twice a year, 2 days event where members of the CFS Advisory committee makes recommendations to the Secretary of Health Mr Sebelius for what directions their government should take to further the cause of CFS. It's a big exercise of "We recommend..." and go back 6 months later and nothing has been done and more recommendations pile up. It's been going on for decades. Why bother, I wonder?  All we need is a  bunch of parrots. That would be much cheaper!

But what the heck, I decided to write my testimony, for the 6th time. Here it is.

CFSAC testimony November 2011

Dear CFSAC panel.

Thank you for your service. I hope that Secretary Sebelius truly listens to your directions and acts. Unfortunately I haven't seen much action since I got ill in the fall of 2008.

Over this past few months, we have witnessed some good scientific debates with exposure to other scientists, and great potential for research breakthrough and funding dollars. Still there is no promises and no grants have been promised, other than a 600 000$ to research behavior changes. Patients need more than a change of their behavior, in the same way that AIDS patients will not get better by eating less fat and more vegetables.

The CDC promised they would remove offending parts from their website. We have discussed it for the last years. They have not done one change to their website. So my physicians are still being told that I should exercise more, that they should prescribe more anti-depressants and that my natural killer cells should not be tested. It is critical that the CDC gets on with the program so to speak, and stops studying behaviors and psychology, association with painful periods and more gyne problems. Patients need to know if they have more chance to give birth to children that will have either autism or ME/CFS. Patients need to know if their disease is transmissible sexually or casually.

The CDC needs to apologize to all patients with ME/CFS for the despicable joke they have made of our disease. They need to recognize that they have been wrong since visiting Incline Village and since NOT visiting Lyndonville and take responsibility for stalling research as well as what they didn't do over the last decades, while other diseases like Rheumatoid Arthritis, HIV/AIDS, Cancer, and others benefited greatly from good research and funding.

CFSAC needs to recommend careful research on XMRV and human gamma retroviruses. Some patients are helped with the use of antiretrovirals, which has not been studied formally but prescribed to them compassionately. With the media outlets promoting contamination theory on both sides of the ocean, Dr Mikovits and her group's theory has been torn apart. Research in HIV would have stopped in 1983 but patients were dying so the government was forced into putting money into research. Here we are a very stigmatized group of patients who literally disappeared from society, however somehow it is considered ok to forget us over and over, because we are not dying, and because we are literally subdued- we can't even protest in the streets. It doesn't make it ok to keep on abusing us or make fun of us as a bunch of tired people. It is not ok for the governments of any countries to keep on abusing their patients and denying them a chance at being productive and thriving.

It is in my belief that clinical trial to confirm the very positive effect of Rituximab needs to happen as soon as possible. With this new data comes many questions. Is ME/CFS an auto-immune illness? Which patients are more likely to respond to Rituximab? Will rheumatologists embrace our illness and give us patients the opportunity to get well like the dozen of norwegians who benefited from Rituximab? How are the side effects and response rate comparing to Ampligen, which 15 years later is still not approved as an acceptable treatment for ME/CFS by the FDA?

How can CFSAC and Secretary Sebelius facilitate the involvement of rheumatologists with our illness, giving patients the possibility to get treatment near their community? Could this be legislated? The reluctance from the medical community to embrace ME/CFS as an illness is huge. There needs to be an intervention somehow, somewhere. Every single patients with our disease have at least 1 incident

where they feel they were disrespected, not believed, refused treatments and told to exercise and go to a psychiatrist. How many more suicide do we have to witness before our governments start to act? Patients have had hope for 2 years, and promises for clinical trials and treatments. This has yet to happen. Do we have to wait another 2 years until Rituximab can be approved?

Where is the hope when patients cannot see it at their local level and when the CDC cannot be trusted to spread the right message around the world?

Patients from around the world are looking up to you, CFSAC members and US government. The Norwegians have stepped up for their people. What will the USA choose to do?

Kati, sick for the last 3 years. Disability insurance in dispute. Financially going into a dark dark hole. Seen by a dozen specialists, 75% of whom lack respect for this disease. 15% more who have no clue as of what to do.

Simon Wessely goes crazy after the new ME Int'l Criteria Consensus publication

It's been a crazy summer.

Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.

Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.

One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.

Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.

The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.



Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)

Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer (July 4th)

Too soon to Translate? An editorial in Nature (July 7th)

RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)

EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)

Murdoch and Vaccines: Exposure of Crimes Reveals a Much Larger Story (July 17th)

James Murdoch is still supported by GlaxoSmithKline (Age of Autism-July 18th)

His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)

Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th) 

New ME International Consensus Criteria (July 20th, Journal of Internal Medicine) 

Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011

Chronic fatigue syndrome: understanding a complex illness (4 authors) July 28th

The real victims of ME are those with the disease (July 29th)

'Torrent of abuse' hindering ME research (July 29th)

BBC Radio 4 Today: 'Malicious' harassment of ME researchers (July 29th)

ME researchers 'receive death threats from sufferers'  (The Telegraph July 29th)

The Economist: Head Case (July 30th)

Professor Hooper: Wessely’s Words Revisited (July 30th)

About "Shoot the Messenger and see it that will cure you" by Rod Liddle in The Sunday Times July 31st 2011

Hillary Johnson: Cry Me a River (Aug 3rd)

Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)

Guardian: CFS scientists face death threats from militants (Aug 21st)

Hillary Johnson: Animal Magnetism (Aug 21st)

Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)

Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)


Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)

Simon Wessly's piece in Spectator: Mind the Gap (August 27th)

Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)

The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)


Protesters have got it all wrong on ME (Aug 29th)

ME patients considered dangerous (Aug 29th)

Professor Simon Wessely's conflicts of interest

Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science?  Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits,  "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.

Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.

We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.

X-treme ignorance

in the past 2weeks, I heard 2 different stories of women that got denied health care even though they knew something was wrong.

The first one had a lump in her breast. she told the doctor who dismissed that as being part of fibromyalgia. It was cancer.

The second one is a long time patient with fibromyalgia also, Who had severe pain after a fall, was returned home with no treatment. 3 years later, after continuous suffering, she committed suiicide. her post mortem examination demonstrated that she had a pelvis fracture.

http://niceguidelines.blogspot.com/2011/07/post-mortem-shows-fractured-pelvis-yet.html

These stories show the horror of discrimination that us patients with invisible diseases go through day in day out. ME/CFS, Lyme disease and fibromyalgia are horrible, often lifelong diagnosis where it seems like many physicians are given the opportunity to think that any symptoms these patients report are fake, unreal, imaginary, and benign.

If you are a physician, a health care professional, or working with a few million dollars of health care budget, please remember that this patent could be your mother, your daughter, your brother, or your spouse. Also please remember that only a very small minority of patients invent symptoms in order to attract attention. All of us patients would rather live the only life we've been given by doing what we love dooing and not being in pain, in bed.

Nuff said.

Letter to our canadian health minister

The honourable Leona Aglukkaq, Canada Health Minister.

Recently I have heard you assigning 5 millions into a clinical trial of “liberation therapy” for multiple sclerosis patients. These patients were going out of country to get this procedure done, and following their request to offer the treatment here in Canada, you agreed and allocated some money.

I am a patient with ME/CFS, (myalgic encephalomyelitis/ chronic fatigue syndrome) which is a neurologic disease as per the World Health Organization. This disease get very little respect in the medical world and very few physicians are knowledgeable about it. In fact I would be surprised that medical students get appropriate teaching about it. ME/CFS can be just as severe as someone with congestive heart failure, end-stage AIDS or progressive MS.

Patients with ME/CFS are usually left to their own mean, receive no medical care and can be very disabled by this illness. The burden it causes to society is enormous, from loss of wage, to medical costs to disability pension payments. Patients are also often discriminated against due to the name of this illness, since most physicians who haven't received any education for ME/CFS think this is quite a benign illness. Lots of patients will report that their physician do not take their symptoms seriously, like chest pain, headaches and other neurologic symptoms. In fact the 3 main causes of deaths for ME/CFS patients are cancer, cardiac events and suicide. Suicide happens due to the lack of support, medical care and beliefs that us patients are malingerers.

Mistreatments have happened in the past with MS patients who would be hospitalized in psychiatry and diagnosed with hysterical paralysis. Recent studies have shown that ME/CFS is not a psychiatric illness, does not get treated with cognitive behavioral therapy or graduated exercise therapy, and may be of infectious origin, from the work of Lombardi et al at the Whittemore-Peterson Institute and Shutzer et al.

http://www.sciencemag.org/content/326/5952/585

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

Statistics Canada counted over 413 000 ME/CFS sufferers in 2010, a 25% increase compared to the last statistics in 2005. Yet recent studies have shown that 80% of ME/CFS patients do not get diagnosed as such and usually discounted as simple fatigue. The amount of money awarded for our illness has been abysmal, lower than 1 million dollar in total in the last 10 years, and most research have been of psychological or behavioral nature. In contrast, there are between 50 and 75 000 patients with MS in Canada that receive millions and millions of dollar in research every year.

Immunologists have proven immune activation and changes in cytokines, natural killer cell function and chronic viral reactivation which are totally ignored in Canada. Moreover, patients with ME/CFS may have an infectious retrovirus as per Lombardi et al.

Patients with ME/CFS get no healthcare here in Canada and no research. The numbers of patients are growing rapidly, however their concerns are still discounted. It is time that our governments who have once received our taxes wake up and start paying attention and stimulate research in our field. Moreover, it is time that the medical field wakes up and that more physicians get trained in caring for us. The fact that this complex illness belongs to no medical specialty is a travesty.

Currently in the USA a clinical trial (phase 3) of Ampligen is going on. Ampligen, an immuno modulator has been in the market for over 15 years now- yet it hasn't been approved to use. Patients should be offered this medicine so they can get relief from their illness and perhaps return to work. Patients should have the same access to health care as patients with cancer or HIV/AIDS.

Today Mrs Aglukkaq I am requesting your attention. Canada is hosting the international ME/CFS conference in Ottawa in September, yet, beyond our community, no one knows about it. I am requesting that you stimulate research funding for ME/CFS and recommentd physicians to get educated about our disease, and start offering treatments like Immunovir, Rituximab (Norway study)  or Ampligen and anti-virals such as Valtrex and Valcyte (Lerner, Montoya). Pathogen studies like XMRV and other Gammaretroviruses should be of great concern for our governments and should be researched with great care.

It is time that our Canadian government pays attention to over 413 000 citizens who are sick and get no health care.

Thank you,  Kati sick for 2 years and 8 months. 

Kati Debelic

Can Science keep up with "good" science?

I am fairly new in the world of ME/CFS. 2.5 years of being sick is considered rookie of the year, compared to the veteran warriors out there who have been stuck with this disease for 10-20- even 30 years. 2.5 years of this hell, facing discrimination, bias, disbelief on top of being ill, and trying to cope, that's long enough. I can't imagine being sick for 10 or 20 years. I had plans for my life. The journey has changed direction drastically, and there doesn't seem to be motivation from the governments around the world to invest in research for this disease.

In October 2009, just a month or 2 after I realized that I may just have ME/CFS, Lombardi et al got published in the journal Science, announcing the detection of a new retrovirus in the blood of patients with ME/CFS and also in the blood of healthy control but at a much lower rate.  I remember the day like yesterday. I had a dr appointment that day and brought the abstract to her. She didn't fall off her chair, and I couldn't understand why not.

See, there is a bias out there. Chronic fatigue, like many call it since it's shorter and more convenient, is not considered to be a real disease. The CDC says there are no biomarkers, they must be right. They also say that the treatment for this disease is anti-depressants, graduated exercise therapy and cognitive behavioral therapy.  The bias started there. The CDC is supposed to be the authority, how can they be so far off, and why? What interest does the CDC have? Who is pulling the strings?

Soon after the Lombardi paper published, the head of the CFS program at the CDC announced that they would look for the retrovirus but it would be likely that they wouldn't find it. Dr Reeves is a psychiatrist. They didn't find it, as it happened in 2010, and in fact at the same time another replication study results was scheduled to be published in PNAS (Lo et al), however the CDC stopped them from publishing and that delay lasted several months.

Dr Coffin, prominent retrovirologist was invited to the October 2009 CFS Advisory Committee meeting in Washington and said that the Lombardi paper was as good as it gets for a first paper. He changed his tune a year later to claim contamination by mouse virus, leading to Retrovirology Journal to publish not one, but 4 different papers claiming that XMRV was just contamination or a lab artifact if you will.

Then just last week 2 more papers were published this time in Science, counteracting the claim of the retrovirus which prompted the editor of the journal to issue an expression of concern to Lombardi et al and requesting them to retract the paper. Dr Mikovits answered back with a "No way Jose!" (well something like that)

So here we are, us patients, waiting. While some are waiting for clinical trials and treatments, others felt they could no longer wait and decided to treat themselves with antiretrovirals. And guess what, for some of them, it's working! However some authors of negative studies like Ila Singh made it clear that patients should not get access to antiretrovirals due to toxicity issues. Dr Singh forgets that Tenoofovir is given to prevent HIV in gay men and also in women in Africa, so why would it be so toxic for patients with ME/CFS who don't even have a single drug approved by FDA to treat their disease?

Epidemics happened in the mid 1980's. Just about at the same time as HIV. However patients don't usually die of ME/CFS. Or at least it is not the official cause of death. And the CDC felt the epidemics were not true epidemics, and thought patients and doctors who cared for them were "hysterical". In an effort to contain the "hysteria" CDC decided to name the disease who was well defined in the past as myalgic encephalomyelitis, now chronic fatigue syndrome.

So doctors that see "chronic fatigue syndrome" in someone's chart as a diagnosis  will consider all symptoms or problems as non urgent, not real, or not reasonable. The name discriminates more that one can think. Doctors have not learnt in med school about ME/CFS. Not many knows what to do, how to diagnose it (there are a few diagnostic criteria) or how to treat it. In fact, the doctors who have been there at patient's side all along, Dr Peterson, Dr Cheney, Dr Klimas, have been given the cold shoulder on more than one occasion.

So where are we going with all this?  Patients are still waiting. There is still no more money allocated to research of ME/CFS, and ME/CFS still trails at the bottom of the list in the NIH funding competing with hay fever, climate change and gallbladder illness Check it out here. The big scorers, the usual HIV/AIDS, cancer, prevention, diabetes, cardio-vascular.

Despite a "State of Knowledge" workshop at the NIH, gathering experts and portfolio holders, and over 1 million of patients- a conservative number- just in the US, no new money has been announced, as the US government is in a financial crisis (though the military budget and NASA budget is ever expanding). Never mind that 1 million of people is debilitated and perhaps are transmitting this disease to their families. Never mind that these people could be you or your loved ones. Never mind that they have been sick for decades with no health care.

From a patient point of view, it is really hard to accept the reality that my tax money generously donated during the working years is not going to bail me out and that my government is not doing anything to get me healthy. It is really hard to accept that if I had cancer, I would already be a survivor and a hero, but if I have ME/CFS I have a malingerer status. It is really hard to accept that I may never go back on my bike again or travel the world again or enjoy the things I used to enjoy in the past. The cause of that would be poor decisions from the government and bias and discrimination.

So in 2011, the Whittemore-Peterson is still doing great research, however they have to fight allegation that their retrovirus is a contaminant, thus slowing their great research and our chances at prompt clinical trials and treatments. The WPI is still going underfunded by government grants and you can bet that the funds will dry quickly if more contamination papers get into the journals and the media splash that follows.

I still don't get the argument that blood of ME/CFS patients is more contaminated than the blood of healthy control- how do Coffin explain that? Contamination theory ain't working. People do not make antibodies when exposed to contaminant. Why isn't the Lombardi et al not yet replicated and getting papers saying they proved Mikovits wrong? Why do people do not believe that the Lo et al paper was a true replication? Why are Stoye, McClure, Coffin so adverse to a retrovirus affecting patients with ME/CFS, is it the disease, or is it the fact that they didn't find it despite spending so much time studying  MLV's ?

As research is going on, the world is watching. Patients can no longer be silent and through the WWW, we have a voice. We are watching. We are asking the scientific community to take a good look at this disease and pay attention to what's going on. Patients need to politics to stay in one corner and the science to remain in a different corner. Governments need to fund research and take a good look at what has been going on at the CDC for so long. Equal opportunity for all is not happening for us.

Please help!

Letter to Mr Obama

Dr Obama is recognizing the 30 years of research, clinical trials and science in HIV/AIDS that has improved the lives of millions around the world. From uncontrolled epidemics, to a stigmatize disease in the 1980's to giant leaps in science and treatments and human rights 30 years later.

However not many know that there was other epidemics in the 1980's, that were ignored by governments and most doctors, and still continues to this day. ME/CFS or still sadly called chronic fatigue syndrome is still a mystery for scientists, stigmatized by society, government and doctors and its sufferers are left for dead, litterally.

In response to a blog article I decided to reply to Mr Obama. I sent him the letter.

Mr Obama, 

While thousands are researching HIV and AIDS around the world, and billions of $ in research has been allocated, there is a group of patients that suffered similar epidemics in the 1980's but has been grossly ignored, and naked in a demeaning manner to trivialize and minimize the suffering of the people. Tell most doctors that you have chronic fatigue syndrome, and due to stigma and lack of knowledge, chances are your health troubles will  be discounted and you will be sent home without proper care. 

Many, many patients have given up on health care due to the stigma barreer and loss of trust in the health care system, or they can't afford the care anyways due to loss of insurance benefits and the loss of disability benefits. There were epidemics of ME/CFS in the 1980's, Mr Obama, discounted as hysterical illness by epidemiologists at the CDC. To this day, the CDC still broadcast on their website that the best treatment for ME/CFs is therapy and anti depressants despite being recommended many many time by the CFS advisory committee that there were severe flaws to theor program.

There are over a million sufferers across the USA and 17 times more that amount around the world, waiting for research, clinical trials and treatments for a very debilitating disease that not only affectswomen, but men and children. 

Mr Obama, scientists are being told that studying Me/ CFS would be a career suicide. doctors do not even learn about this disease in med schools, nor this disease belongs to any medical specialty.  Doctors that treat, the very few of them are marginakized by their colleagues. 

Patients do die of this illness only it is not tracked by statistics. Cancers, heart disease and suicides. the ones that are living are in a living death situation, housebound, bedbound with no help whatsoever. no patients would argue that this is a Tuskegee eperiment.

Patients wonder if the recent discovery of a link with retrovirus XMRV with chronic fatigue syndrome will be phased out. The research that have come out from the Whittemore-Peterson Institute have come out of recognititon of human suffering and that an nfectious link has been made and now violently repressed by scientific communtiy without deçent attempts at relication of the initial study by Lombardi et all in 2009. i request that Your government independantly investigate the politics behind XMRV, science and chronic fatigue syndrome.

There is much to say, much discrimination and injustice and this has to stop. 

thank you, Kati sick for 2.5 years.

What is it like to have severe ME? Emily's story

 "Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she ho...pes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
 
(Permission to re-post)
 
Emily's Appeal
 
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
 
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
 
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
 
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
 
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
 
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
 
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
 
Many days I feel utter despair.
 
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
 
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
 
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
 
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
 
By Emily Collingridge 2010-2011
 
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info

A very much needed commentary from Craig Maupin

I have been fairly quiet in the last month dealing with health issues and stressors that all patients with this illness encounter. However I could not skip this commentary from Craig Maupin, I think it is just and it is important for all advocates of our illness to read. I hope that each one of us take a look at the impact we are leaving behind us. 

Our Advocacy:   Lasting Damage Done, 

Despite the Best of Intentions

            By Craig Maupin at http://www.cfidsreport.com  

In the cinematic realm, good intentions are always rewarded.   Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but such strategy may still hurt vulnerable people --deeply and irrevocably.

Several actions by a small minority of the CFS community are hurting vulnerable people.    Like most strategies, their actions may be well-intentioned.  Through their efforts, this minority may feel an emotionally cathartic release and empowerment.   Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.

I love this community.   Like each of us, I have suffered and experienced great loss as a result of this biomedical illness.  But counterproductive efforts compound that loss.   To stand by and say nothing is to idly watch damage being done.

What strategies am I speaking of?

1. Verbal abuse and anger-fueled interactions with the scientific community.

This illness will never be defeated until we forge positive relationships with the scientific community. Period.   A solution will not come any other way.

For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.

2. Unreasonable demands and heated interactions with journalists.

Solid journalists must tell more than one side of a story. Objectivity should be their job.

A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.

Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.

3. Patients acting as 'laymen virologists', passionately engaging the scientific community.

I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day. I say that with no hesitation.   A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.

That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness. Sufferers of CFS desperately want hope. But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility.   The scientific community undeniably knows the difference.

These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress. Published research by credible scientists is the best way to change perceptions about this disease.    Laymen debating scientists -- on our behalf --will have the opposite effect.

4. Mass letter campaigns

Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy.   I'll leave it at that.

Anger is often a byproduct of loss and suffering, and the CFS community has seen its share.   But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts.   If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed.   The harm done may last decades.

Harmful and permanently damaging strategies may stem from very real problems.   Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language.   But trust, relationships, and credibility must be built over time, if we are to change perceptions.   Our history is no excuse to deepen our problems.

These four strategies (listed above) are not helping those with CFS.   Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process.    In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me.    Lasting damage is lasting damage, even if done with the best of intentions.

　Articles on the CFS Report may be copied and posted to forums and other sites. 

Craig Maupin may be reached at editor@cfidsreport.com

Expectations

Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011.  There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly,  the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person.  2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.

It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.

Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.

This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes  have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.

My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.

The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than  millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.

So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.

The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.

Xtraordinary

Globe and Mail article

It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program that has been investigating false illness beliefs and sexual abuse as a child in CFS patients. 

The Globe and Mail calls these diseases "rare".  Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.

We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.

The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.

The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.

My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided?  And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.

The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province.  Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.

Since here in Canada we have socialized health care, I believe that the care that is paid by the system will  consist of medical doctors and real science. At least I hope.

X-quoted

This is not my quote! I e--mailed it to myself, it came from last summer from a forum. I want to share it, from unknown poster.

"XMRV sequences are notorious for their false viral beliefs. They are lazy, slow replicators. They often employ the sick role and manipulate gullible herpesviruses CMV and EBV as enablers. They hide in tissue to avoid the viral responsibilities of circulating in blood, such as showing up for PCR tests. Malingerers!"

Excuse me!

My mailbox received a special notice today from our supposed to be national advocacy organization. I mean, I am not american, I am canadian. But still. They were supposed to be the leaders, the protectors, the supporters of all of us, the lobbyists and the people to trust they will lead us in the right direction.

I am talking about the CFIDS Association of America.

And I am very sad to report that they did none of that.

You can fnd the notification from Kim McCleary here: Putting Research First

Here is Mrs McCleary quoted:


"Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.

I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust."

There is more to the message. But the flavor I get, and I may be wrong on that, is...
-I'm sowwwy... we won't do it again...
-Please forgive me, I am paid 180 000$ a year to admit that kind of mistakes we have done, and I am not going anywhere.
-"Our ressources are spread thin"... Yes, because you are losing the community's confidence and haven't done anything about it, and also because you are paid 180 000$ a year which takes away from research and advocacy money. Also... how about that 80 000$ faces of CFS picture tour that you did? Did that really help?
-What you are really saying, Kim,  is you are walking away from patient advocacy and concentrating only on research. What I want to know is... is it really worth paying say...8-10 people to coordinate research and research money, when a not for profit institute like WPI could do it more effectively with less staff?
-Are you also saying that you will not speak publicly again on our behalf, because the last few press releases were not really successful. perhaps even harmful?
-The message is... we're not really good at patient advocacy, so let's do research. Does that mean that patients are not deserving of a body that focuses on advocacy for ME/CFS, and that does a good job at it, like AIDS advocacy, or MS, or ... fill in the blank?

I think this e-mail has been a very sad turn of event, in my opinion, looking at the whole history of CFIDS Association of America. It seems to me that things started to stall seriously from the mid 1990's.

What is needed, is someone with back bones. Patients have been stood up for decades now. We need highly influential people, someone that will make a difference NOW, not in 15 years. We need changes now. The time is now.

And while I'm at it... CFIDS name is retarded. No one calls it that anymore. Not that CFS is any better. But part of the advocacy is advocating for a better name for our disease. Oh, I forgot, you are not advocating for us anymore. Then I would suggest you lose the "association of America" too.

There has been a petition going around lately, to ensure that CFSAC, NIH and the CDC know that CAA do not represent me and do not speak for me.  I have refrained from signing this petition. However today, I think I will sign it, because it is true, you inside voice is not representing me either.

Link to the petition

Khaly's blog post: CAA and advocacy, a guest commentary

Exposure in Wall Street Journal

The Wall Street Journal published another article by reporter Amy Dockser-Marcus on March 12th 2011.
Here it is: http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html

Here is the short version:

"Patients, Scientists Clash on Fatigue

Patients say scientists haven't worked hard enough to find the cause of chronic fatigue syndrome. Scientists say some patient advocacy slows research."

Ok Amy... Slow down a little bit... 

Some patients have been ill for 30 years. 30 years is a long long time. Some 10 years. 10 years is still a long time to be sick with no health care whatsoever, problems with disability insurance (or worse, denial of said insurance) and being literally out of society. 

As everyone knows, a paper published in Science has linked ME/CFS to a retrovirus called XMRV. It has created  lots of  controversy, including the very quick words of Mr Bill Reeves who was at the head of the CDC, who said that the CDC would check for the claim of the retrovirus, but chances are they wouldn't find it. Indeed, they didn't find the virus anywhere, in their tired cohort or in their controls. Many other scientists also quickly published their paper with no luck in finding the retrovirus, using only one lab technique and not using the ones that were specified in the Science paper. 

Since then, there has been the first XMRV conference and many retrovirology conferences failed to invite Dr Mikovits to speak, including the recent CROI. 

Part of the history of ME/CFS proves quite similar to many scientists trying to shush the XMRV story. Dr Elaine De Freitas then scientist at Wistar, found a retrovirus association with ME/CFS and the CDC and other scientists failed her, and failed to reproduce her study. She got her funding to research cut off and while she was preparing to prove this retrovirus  she was involved in a car accident and got disabled with complications of this car accident. This was in 1991. No one even tried to find it. The topic was just dropped. 

So in 2011, here we are, patients whose only voice is the internet, when we are well enough to get there. Patients have joined forces, somehow, in spreading the message that good science needs to prevail, and that money needs to be spend in elucidating the cause of ME/CFS. 

ME/CFS is an orphan disease, no medical specialty is taking the illness under their wings. The funding has been minimal. Doctors have not learnt about the disease at school, or they have learnt that the patients' complaints are vague and perhaps of psychiatric origin. So over the years, patients have given up going to the doctor. Scientists have been told that researching ME/CFS was a career killer. So they turned towards HIV/AIDS research, perhaps cancer, safer options. 

The CDC ensured that us, the patients would not get biomedical testing by posting on their website not to test unless it was to rule out other diseases. The CDC also seem to take pride in their own research, and post the best of the best, link of CFS with childhood trauma here. 

Scientists, in this case, in Amy's paper, Stuart LeGrice, feel that patients are interfering with the research, and should leave scientists alone. Hmmm... Honestly, patients are quite worried that another extreme denial will happen and that good science will be buried to the advantage of organizations that want to save money, disability and health insurance. Governments. For them, status quo is good. And certainly unveiling lies, deceit, omission, mistakes, and gross incompetence would be embarrassing and very very costly. 

So what is the solution? 

Collaboration. Trust needs to happen. Patients need to be heard and should be included in government committees, conference planning and even (and especially) within the  CDC. Patients are the experts in their own disease. They should be considered as colleagues by researchers and physicians. 

Patients have all the time in the world and have researched their own disease and associated science. Dismissing this knowledge and the patients themselves delays research and finding treatments for us patients. 

I will close with a quote from Dr Jose Montoya, a prominent infectious disease doctor based out of Stanford University, who said this at his recent talk at the university: 

"Hopefully one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness."

You can watch it here:

X and the clowns at the CROI circus

This week had one of the most important annual retrovirology conference in the world happening, CROI, hosted this time by Boston.

CROI

HIV has been the focus of this conference forever, with crumbs left for HTLV. XMRV has not been a huge focus in 2010, and in 2011, a full 1 hour slot was reserved to discuss abstracts accepted, along with a presentation by Vinay Patak on a different  day .

XMRV: New Findings and Controversy (List of Abstracts)

For the second year in a row, Judy Mikovits was not invited to speak or even present a poster or an abstract. Nor were Dr Ruscetti, Dr Alter and Dr Lo and Dr Hanson who all can find XMRV and exclude the possibility of contamination. Judging by the list of abstract it just sounds like the conference organizers  had an agenda : ensure that no XMRV research happen in the future.

UK retrovirologist Jonathan Stoye was the  chair of this presentation. Why CROI picked him, we will likely never know. He has also been brought from UK to the blood advisory committee in December to discuss the need to ban ME/CFS patients from giving blood. He was also the chair at the September 2010 XMRV conference where Dr Mikovits was not invited either to present, and after a lot of patient protests, she was given a ridiculusly short amount of time to talk.

Stoye made a fool of himself. He fell short of science. There is no way around this.

Here are a few quotes that came out of his mouth at the most recent conference:

"And so I think it's fair to say that the initial report of an association with CFS and XMRV has not yet been replicated. There is one paper, namely that by Lo et al, which it has been strongly argued is a support of the idea that a murine leukemia virus like virus is involved in CFS, however I'm not convinced by that paper, I'm happy to discuss it later on, but I don't think that that can be taken as positive evidence to confirm the study by Lombardi et al. So, not only has XMRV not been found in CFS patients, it has not yet been found in anything like the original 4% figure in control populations, so there's now considerable doubt about whether this virus is associated with XMRV "

"I predict there will be less and less interest in XMRV and association with disease."

Dude, this is what you wish... because you can't stand seeing someone other than you being able to find a retrovirus that will revolutionize the world of patients that were (and still) thought of having a psychiatric illness. This is called professional jealousy. So if I can give Stoye an advice, spend more time in the lab, culturing and not focusing so much on the PCR, and much, much less time talking with the boys in the retrovirology circuit.

And a last one, really precious... 

"I can talk about an anecdote among urologists in Britain. They were suddenly alarmed that the cell line they’d been using was loaded with virus. I think there are some of us who’ve been working with XMRV or related viruses for, well I’ve been doing it for 35 years or something and I know I’m negative. Or at least I was the last time I looked. "

Stoye may want to send his sample to VIP DX in Reno, because retrovirologists in UK can't find XMRV. 

A second topic of controversy is the comment made from Dr Jeanne Bergman, in the audience, from AIDS truth. Dr Bergman, if you google your name you will read this. The ME/CFS patients deserve an apology. 

" There is a curious correlation between people who don't believe in the existence of HIV or don't believe that HIV is pathogenic and people who do believe that they are infected with XMRV and some of those people, who have actually got AIDS like symptoms are taking ARVs, not for their HIV but for their XMRV. It's absolutely fascinating and I hope some day someone will write it up"

I have only been ill for 2 years, which is not long for the average ME/CFS patient. 10 years or more of being housebound or bedbound is fairly common. There are people in nursing home. Most patients have not even been diagnosed, or gotten appropriate treatments. For the lucky ones that got Ampligen as part of a trial, and improved, it was just too cruel to deny them the drug that allowed to get their lives back. What I can say, is if there is a small chance of me recovering enough to work out, go back to work, travel and enjoy life again, I would take whatever would make me recover. May it be antiretroviral, 

Ampligen, Rituximab, or others. I would also risk to be the placebo in a double blinded clinical trial. I would move across the country for treatment. It would be better than being judged by doctors that don't know squat about the disease so ironically called Chronic Fatigue Syndrome.

And lastly, the conclusions from the panel including Bill Switzer and Stoye, that XMRV is an infectious virus, but not related to ME/CFS and that lab workers should be tested for it. But remember earlier on he said that association with disease will generate less and less interest. 

The absence of Dr Judy Mikovits, Dr Ruscetti, Dr Hanson, and others have left the patients very upset since the CROI conference presented a very unbalanced view of the state of XMRV research. But just a few days later, we learnt that all this nice people, AND Dr Luc Montagnier, one of the co-founder of AIDS, were in South Florida discussing the real matters, Ampligen and the retrovirus. You can see the article here.

That news, and many many recent  positive articles in the New York Times and Washington Post revived the morale of the troops

Amy Dockser Marcus, WSJ, March 5th 2011

Leonard Jason, WSJ, March 5th 2011

. 

David Tuller, NYT, March 5th 2011

We can only move in the right direction from here. There should be news from serious studies, including one that have happened in Calgary, Alberta.

X-tra proteins?

For starters, check this out:

Dr Klimas says she has been filmed for 2 hours for just about 10 seconds of air time. The big news is a research that came out yesterday announced the presence of proteins in the spinal fluid of CFS patients that is not present in normal controls.

Funny that it came out less than a week after the psycho study huh?

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome By Dr S. Schutzer et al.

Essentially, Dr Schutzer found proteins in the cerebro-spinal fluids in CFS patients that are distinct from chronic lyme patients and healthy controls, including some complement proteins, associated with inflammation. This means that we can tell scientifically that ME/CFS is real, and it is not an imaginary illness.

Well we knew that... We just had to let the scientists prove it. Of course more studies are needed. I hope they hurry...

In the meantime, one of our fellow patient Charlotte von Salis attended an education day at the National Institute of Health, it was a presentation by 3 doctors, Dr Shih-Shing Lo, Dr Harvey Alter, and Dr Fred Gill. You will be able to find the video cast here  when it gets available for the public. It was only available to NIH people, but Charlotte has been able to attend and blogged about it, and one journalist/blogger Mindy Kitei hosted the blog post here here

What I have to say about it, and I won't be shy, is what the hell, NIH, what were you thinking? Mindy, in the comment section, said "The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy." Dr Fauci is a long time accomplice in keeping chronic fatigue syndrome in the shadow and keeping the disease classified (unofficially) as a psychiatric disorder. He is at the head of NIAID (National Institute of Allergies and Infectious Diseases) and has quite a large budget to manage, but won't share any of it with the CFS program. Anyways, it sounds like Dr Gill's presentation was as atrocious as the slides that we have been able to view before  the presentation:

Dr Gill's slides

As a comparison, you can view the science as viewed by Dr Lo and Alter through their presentation at the same education day:

Dr Lo's slides

Dr Alter's slides

Patients with ME/CFS needs to know what is the agenda of the NIH and NIAID and why they perpetuate the corruption, discrimination and bad science of 25 years since the epidemics of the 1980's. ME/CFS science proved through 4000 papers that the disease is not psychiatric. There was a great opportunity this week to come clean and dispel the myths. So why inviting a doctor to spread more psycho-babble through the world, when XMRV has been twice linked to patients with CFS and abnormal proteins have just been found in the spinal fluid of patients ?

The psych lobby is playing big cards, almost desperately it seems, just the same way a husband is trying to hide a mistress. It ain't working. There are traces everywhere, and it's not perfume! The psych lobby group, the CDC, the MRC (Wessley school) have committed crimes to humanity. It's about to get uncovered. In the end, science always wins.

I will leave you tonight with another goodie from Hillary Johnson, a genius piece called Hey, Lazy Arses!

X-cessive psychobabble

Today has been a sad and upsetting day for ME/CFS patients, the day the PACE trial results from the UK were revealed and shared around the world, to the delight of most that don't understand what ME/CFS is. Just take a look at LA times' and NYT's articles' comments. Some people are saying, hell ya, get them therapy, and these people should go back to work.

L.A. Times article

N.Y. Times article

PACE trials stands for Pacing, graded Activity and Cognitive behavioral therapy: a randomize Evaluation. It was initiated a few years ago with a few millions pounds budget, by psychiatrists that aim at proving that ME/CFS is a psychiatric illness.

They found fatigued patients. They didn't have to meet the latest definition of ME/CFS via the Canadian Consensus Criteria, because that would have skewed the results really bad. They just needed to be fatigued. The used the Oxford Criteria also known as empiric definition.




The ‘Oxford Criteria’ (1990) therefore defined CFS/ME as a syndrome in which:
-there is a definite onset (ie it is not lifelong)
-fatigue is the main symptom
-the fatigue is severe, disabling and affects both physical and mental functioning
-the fatigue has been present for at least six months, during which time it has been present more than 50 per cent of the time
-other symptoms may be present, particularly myalgia, mood and sleep disturbance.


This definition criteria can easily include patients with depression. It has been proven by Dr Leonard Jason from De Paul University. You can watch this 1.5 hours video if you are interested in the topic.

In  contrast, the Canadian Consensus Criteria offers precision in diagnosing real ME/CFS patients via the definition. The cardinal symptom of ME/CFS is "post exertional malaise" (I hate the word malaise, it diminishes the symptoms) which means the patient experience relapse symptoms after exercise, or straining activities (it can include cognitive activity too). You can view the Canadian Consensus document here: 

Canadian Consensus Overview

So the psychiatrists in UK, authors and investigators of the PACE trials, most of whom have conflicts of interest as they are attached one way or another to disability and health insurance companies, picked 640 people with fatigue that lasted for the last 6 months, told them they have ME/CFS and randomized them into 3 groups, CBT (cognitive behavioral therapy), GET (graduated exercise therapy) and pacing of activities. According to their results, exercise and behavioral therapy helps treating the disease. And they went on to tell the whole world about it, just like the 4 papers in the journal Retrovirology calling XMRV pure lab contamination. 

Today the patients as the news spread on CNN, LA Times, NY Times, BBC, and other wires. You see the title like this one all over the web: "Study says behavior and exercise therapy best for treatment of chronic fatigue syndrome",  Us patients know that tomorrow when the doctors will read the news, they will see that as headlines and will refuse testing, prescriptions to patients that are really sick. 

The PACE trial did not study the sickest of the sick ME/CFS patients out there, the ones that can't care for themselves, the ones that can barely make it surviving, the ones that even stepping out of their doorstep will throw them in a relapse that may last weeks, perhaps months. For the regular person, it is hard to understand that there can be an illness that if you exercise, push your physical or even mental limits, you get worse and "pay" for it afterwards. 

PACE aimed at vilify patients for declaring themselves sick and unable to work and claim disability. PACE aimed at putting the fault on the patients instead of listening to them and researching bio-medical causes for their illness.  PACE is aimed at reducing the ever increasing costs of health care by refusing treatments of a whole disease that affects millions around the world. That disease happens to have vague symptoms, and taken one at a time, may not seem "that bad". However, if a specialist sees patients over and over,  he will be able to find patterns in the illness, and definitive lab results that will tell them that the immune system the endocrine system and the autonomic nervous system are dysregulated and causing lots of damage for the patients. 

Psychiatrists will only see that the patient is lazy- or have faulty coping mechanism, or is depressed. Perhaps they will be given a bonus for proving that ME/CFS is not a physical illness. It is only sad that the receiving hand is patients that have lost a good job, and a good life, or worse, haven't even had a chance at living their adult lives the way most of the population live it. 

In the 1980's, we had an HIV epidemics. The research was slow and government even slower to fund research into HIV because a group of men were labelled as being on the fringe of society. They spoke up and protested and eventually, they got treatment, however at high human cost. 

What the general population doesn't know is... there was likely another epidemic brewing in the 1980's, proven by the Incline Village, Nevada cohort and Lyndonville NY cohort. Some 25-30 years later, a fearless researcher called Judy Mikovits finds a retrovirus called XMRV in over 98% of a ME/CFS cohort, which is still refuted in UK as laboratory contamination. 

Patients around the world wonder... what is the future for them? Will the CDC, and their government  adopt the PACE trial results and recommends doctors around the world to stop testing patients for infectious causes that present with fatigue? Will the governments and insurance companies adopt PACE trial to get away from huge payments in disability for patients that can't work, instead of paying into research? Will more patients go homeless and without health care due to this research? 

It is scary times. Science VS money. Which one? 

To my knowledge this is the illness that receives the most discrimination, and it's not even recognized as such, because people shut down when you mention these 3 words: chronic fatigue syndrome.