“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.”
— William Faulkner
The piece of my last post that generated the most heat was my disavowing a real knowledge of the politics, but noting lots of contentiousness. Let me start by saying that I wasn’t meaning to imply a lack of interest, but of expertise and energy. I certainly didn’t mean that I couldn’t relate or had been spared; I got enough experience in LymeLand to get the flavor, on a smaller scale. It’s just this particular cast of characters that is new to me. It is true that I managed to escape being labeled or treated for most of a decade, until my family got sick too, but at that point I lived it.
In any scenario there will be individuals who are dishonest or simply assholes. There are others who are being true to their beliefs and intentions, but get caught in the cross-fire because of honest disagreement. The bigger issue I see expressed in my letters and what I’ve seen on the forums is a disaffection with the CAA. I haven’t spent any time in their sphere, but a quick look at their annual reports show that in 2009 they took in $1.7 million and spent $700,000 on research. In 2008, it was $1.5 million in and $350,000 out for research. In 2007, $3.3 million in and $265,000 for research! Here is their mission: Mission: For CFS to be widely understood, diagnosable, curable and preventable. Strategy:To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. I think it’s safe to say they’ve failed rather miserably, even without being privy to all the sordid political details. In the world of political organizations, everybody gets to vote with their feet and checkbooks.
Every once in a while somebody writes something that indicates that they think that Ali and I are accessing treatment and medical care unavailable to others because we are privileged. We have Blue Cross Blue Shield of NM, a subgroup called The Pool. It is state mandated poor people’s insurance. We qualify for a reduction of premium by virtue of our income being some allowed amount above the poverty guidelines for a family of four. Our medical expenses have been running almost half of my husband’s take home, and until recently he was the only one working.
The reason I don’t have Medicare is because I was turned down for SSD. It took me a couple of years to apply, because I couldn’t believe I wasn’t going back to work and I thought it was retroactive. Then it took two years to get to the hearing with the administrative law judge. The judge was openly hostile to the idea of a doctor who could still read, write and use a computer, but not make a living. He had over a thousand pages of medical records, including a near death experience, and he thought I was faking. After the hearing he ordered a new psych eval. Because my house was going into foreclosure, a dire circumstance petition was filed and the judge turned me down. My case is in appeal.
My financial circumstances have also been adversely affected by the disbelief of my disease in my family of origin. I know from my mail that this is not a rare story. Many have been abandoned by family members who would have helped had they known that it was a real disease and not a character flaw. For some, the disbelief has been as damaging as the disease. My guess is this will strike a chord in many.
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>Thank you Dr. Jamie once again for your honesty. It's so refreshing!
Love the quote by Faulkner…it bear repeating. May have to use this soon on something!
"Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth. "
— William Faulkner
All the best and lots of love,
Sita
>Thank you for continuing to share your experience. I am sorry to hear that you have shared in some of the unfortunate circumstances that others with M.E. have, but I suppose that gives you more understanding. I wish you the best.
Patricia Carter
XMRV+, 24 years M.E.
>Aside from your intelligence and medical expertise, I have been greatly drawn to your honesty and forthrightness. It was unnecessary to divulge such personal information, but there are many who might thank you for doing so. Thank you again for everything. xo
Heidi
>From the trenches she rose…
Thank you for sharing this so openly. It once again validates our belief in you and the WPI for their commitment to patients alone.
Bless you and yours, Dr. Jamie.
>Thank you for your honesty in your post. However, you do not owe the patient community a public account of your finances and capacity to pay for health care. Not me anyway. You have a right to privacy and dignity as you pursue health for your family. I know there are many imbalances in the ME patient community's ability to access healthcare, but this is a political problem not a personal one. Lets' complain politicians, not criticize patients.
>I can't believe that your family (of origin) would treat you that way. What knuckleheads! You and your daughter are two amazing women who anyone in their right mind would be proud to be related to.
>My family of Origin left us as well. They first did an "intervention" on Blake, thinking it was all in his head as well and he left to go with them for an entire year. When he called me to come get him, he was nearly 55lbs down in weight, foul odor emulating from his body and was vomiting Blood. I picked him up, got him into the car and lovingly took him back to the ranch. Nobody has called since. No letters, no emails, no cards, no presents or cards for Blake on his Birthday. Just a harsh silence. My Father is still in our lives. But he doesn't "get it". However, he is a decent enough man not to shun us. Plus, he is strategizing with us to help us with Legislation. It is one tiny glimpse of a family…..compared to our festive 20-100 people at each gathering…Thank you for broaching this subject. On the Politics…..I leave that to professionals! Best, Julia
>I agree with Heidi and others, you don't have to account for anything! Even if you had been more priviledged than others, that would hardly be your fault and none of people's business.
I appreciate your honesty though, on other matters!
>I think your criticisms of CAA are a bit simplistic. In the region of $4m (I believe) went through their accounts from around 2006-2010 to pay for an awareness campaign they were running with CDC money. They couldn't spend that money on research. And it may have involved some of their resources to be involved.
I think the awareness campaign was better than not having one. Not being diagnosed can be tough with this illness and the percentage diagnosed has previously been shown to be low.
Also there are a lot of ME/CFS patient organisations including many national organisations who raise nothing or virtually nothing for research.
>the abandonment has been openly hostile. denial is such a comfortable, smug place to be. what hurts me most is the loss of my children. love. xoxooxo
>I don't think this post helps.
Just two posts earlier Dr. Deckoff-Jones stated “As an observer, I am struck by the divisiveness in the ME/CFS community, when so many worthy common enemies abound.”
The divide just broadened….did the CAA just get included in the list of 'worthy enemies'.
The facts, as stated, were simplistic; they did, as a earlier commenter pointed out, reflect money spent on the media campaign – which we discovered when we went through them in detail on the Forums – something that was not done here and something, that, in my opinion, should have been done if a representative of the WPI was publicly airing them.
I'm not sure why the Clinical Director of the WPI is putting this kind of post out? What do the CAA expenditures have to do with the WPI's clinic?
Even if those facts were interpreted correctly…I ask why? Having the two biggest ME/CFS organizations publicly slamming each other is not my picture of a useful situation. Much better to have them working together – which just got a little harder to accomplish.
>It's tricky Cort. This blog is personal. I would like to continue being open with how I see the lay of the land, even though I now have a position with the WPI. As a patient, the numbers speak clearly, even though simplistically. The CAA has had a lot of time and money and not much has come of it. I don't feel helped. I would never give them money. I am not speaking as a representative of the WPI. Just me.
Jamie
>The divisiveness I was referring to was actually about individuals and small groups within the community sniping at each other rather than supporting each other's efforts or joining together in something larger. The major organization representing the patients in this country not being representative or even contributory is a bigger problem than divisiveness. As I said, I am not a political person. I am new to the community, but many who have been around for a long time are disaffected and sometimes a newcomer sees things clearly. It's a shame. Again this is not coming from the WPI, but from me. I would like to be able to continue to speak for myself despite my work at the clinic. I've been very critical of a particular association of Lyme doctors. Why not a CFS organization? My association with the WPI doesn't mean that I can no longer be critical as an individual or that I now have to become a politician. Obviously, I wouldn't be a very good one:).
Jamie
>I appreciate that. I obviously don't think of you as Dr. Jamie-Deckoff XMRV blogger any more but as someone with a leadership position at the WPI. Your opinions, particularly when they reflect on CFS matters, for better or for worse, will be construed as representing the WPI – even if they don't.
I would strongly disagree with you, though, that little has come of the CAA's funding. The 7/8 million media campaign came of it. The CFSAC committe is present because of theirs (and others) work. They played a key role in the disability ruling. The new opportunity for participating in the Congressionally mandated 50 million medical research fund for the Defense Department came about from them. They were the sole supporters of the Pacific Fatigue Labs repeat exercise studies which are transforming the way research studies are done. They funded Dr. Light's extraordinary muscle receptor studies which have aroused so much interest. They funded Dr. Huber's work on endogenous retroviruses and Dr. Shungu's work on mitochrondrial problems in the brain – both have received large ROI grants from the NIH – a rarity for CFS. They have several exciting inter-connected research studies underway.
Obviously neither they nor anyone else has discovered anything a earth-shaking as XMRV – but that is a once in a several decades event. Every organization has its strong points and its weak points. I say critique the weak points in our community and support the strong points.
Thanks for the opportunity.
>I'm sure you have the support of most patients Jamie, as does the WPI.
It is quite clear that this is a personal blog given you are sharing parts of your personal life that frankly you shouldn't have to share.
>I want Dr. Deckoff-Jones to continue be able to talk for herself, even when she is now connected to the WPI.
Cort, I really wonder if you very protective stance of the CAA works the other way round, too. Do you protect patients from the CAA as well? You know many were not happy with the tv spot showing a tired, depressed woman at work.
The main question that remains unanswered is: Why can't the CAA support XMRV research and the WPI 100%? That's what a majority of patients wants them to.
Sienna
>The fact that the CAA took money from the CDC is a problem.
Samuel Wales
>It'd be a sad day if Dr Jamie had to zip her mouth about her personal experiences and thoughts just because a few people won't allow for the fact that we are human beings first, and can and do fulfill many different roles. Perhaps a disclaimer permanently in place at the top of the blog would satisfy the critics?
I'm grateful, Dr Jamie, that you share your journey with us. I have been fortunate with my family, but I am well aware that many, even most people with ME/CFS have not, and the blame for that can squarely be put at the door of the CDC and the Wessely school of thought about the disease, who have managed to take control of most of the medical profession and the media.
I too find it hard to understand why our patient organizations are so ambivalent about the WPI, who have changed the game (thank heavens!) and are continuing to do so in a scientific and in a caring way.
>Cort the truth is out, you can't hide what the CAA isn't doing. They have no interest in finding the cause of ME/CFS. They have three well paid employees, who earn over 1/3 of the total revenue. The CAA is a dinosaur.
>CAA Mission: For CFS to be widely understood, diagnosable, curable and preventable.
Strategy: To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
The CAA has failed miserably. The PR campaign was a complete failure, despite millions poured into it. The pathetically few research studies they have funded have fallen far short of their mission. And in the last year, with the most exciting and promising research as yet published, the CAA has done… nothing.
Even their attempt to explain it to us, the public, using masking tape and citrus fruit, was a sad joke.
We do not have a national organization that represents us at all. We have an organization that has prioritized paying its three lackluster employees over advocating for and funding XMRV research and the work of the WPI.
Buck and shuffle all you want Cort. The CAA's record speaks for itself.
>It is clear that this blog is a personal blog and always has been. It also seems obvious that Cort, Defender of the CFIDS Assn of America, is looking for a way to keep Jamie from speaking her mind about the CFIDS Assn.
Too bad, Cort. It's not working this time. Did you forget you are not on your forum where you control everything?
Lucy
>Cort,
Are you speaking for the CAA here?
>Jamie,
I just want to express a heartfelt thank you, to you and your family. I can't say it big enough. That you are not in a place of privilege, but in the same boat as so many of us, struggling to survive while you do so much for others . . . well, I don't even know what to say. Thank you.
Kit
>Please don't stop blogging.
Many of us across the world (UK here) read your blogg.
I have never thought yr blogg to be anything todo with WPI.
Stif upper lip, keep up the good work here, pretty please.
Thank You
Fly
>I have never once thought of this blog as a mouthpiece for the WPI. Never once. I have always thought of it as being the candid reflections of a private patient. And I hope that doesn't stop.
I have to add that the CAA hasn't done anything for me, either. Any spare change I round up goes to WPI, where excellent research is happening.
Sue Baker
>Sorry Cort, but the CAA has failed us miserably. It is sad and unfortunate that you can not see that.
>You're right, CAA has failed miserably in general. Boycott CAA, Support WPI.
Thanks for speaking out with this great blog post. My experiences with family and doctors and society's hostility mirror your own and that of almost everyone who has ME.
A request: do you mind referring to the disease as ME? This is an easy way for us to be treated more like we should. It is easier to say or type ME than "CFS"- one less letter!
You are very influential and a doctor of your stature using "ME" will help all patients. Any name change will come directly from patients refusing to use "CFS". CDC and UK govt will only follow with extreme reluctance, never lead on this or anything else to do with ME.
>It is clear to me that Dr. D-J is speaking her mind as a person w ME who is a doctor, not a spokesperson for WPI. Her's is an extremely valuable point of view and i have learned a lot from this blog i don't want that voice muffled or distorted in any way. Please keep speaking authentically from the heart and mind as always. Thanks for all you do!
>Quart – This is not your bully pulpit. Nor the CAA's, if there is a distinction. One wonders. Your tireless, and tiresome, defense of the CAA isn't helping the cause. Quite the contrary.
Twenty years of Kim McCleary and nothing has changed. I'm worse off because the CAA has done little to speak out against the harm done me and the other 17 million patients. If the CAA spoke out half as strongly against the CDC and all those that harm me as as you do in support of them I might have some kind of a meaningful treatment, a name that befits the severity of my disease and something other than ignorance and scorn from the medical community.
A group of underfunded patients orgs. fired off a set of demands to Elizabeth Unger and through pressure on her superiors got a meeting with her. The unofficial response from the CAA has been a note of caution not to trust the CDC. Thanks for the tip.
We hear from the CAA that there are all kinds of advocacy and that Act Up tactics are not their style. No kidding. Act Down?
What we hear from the "Desk of Kim McCleary" is nothing but drivel. Two inanimate objects for the price of one. Albeit a high price, from someone who would rather cut staff than take a pay cut.
I speak anonymously because my health doesn't allow for more defense of the CAA in the form of offense in my inbox from Quart.
Thank you Dr. Deckoff-Jones. Please keep your views coming. I, for one, am able to discern your view as distinct from the WPI and appreciate them.
>This is a prime example of why the CAA doesn't speak for me:
http://www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/
>thank u Dr. Deckoff-Jones, sooo much for u'r
" Voice of Truth" and the sharing of u'r heart.
"I feel that compassionate thought is the most precious thing there is. It is something that only we human beings can develop. And if we have a good heart, a warm heart, warm feelings, we will be happy and satisfied ourselves, and our friends will experience a friendly and peaceful atmosphere as well. This can be experienced community to community, country to country, continent to continent"
Dalai Lama………Blessing's
>We have two of the biggest ME charities in the UK disagreeing with each other over the recent PACE trial.This illness is a contentious issue and there will always be controversy surrounding it.Personally, I believe that we (the readers of this blog) are able to easily distinguish between Dr. Deckoff – Jones's role at the WPI and the personal opinions she shares with us in this blog.
Keep speaking your mind Dr.Deckoff-Jones. If people don't like what they are reading, then quite simply – they can LOG OFF!!
>Sienna: "Cort, I really wonder if you very protective stance of the CAA works the other way round, too. Do you protect patients from the CAA as well?"
That was funny Sienna. Or were you actually serious?
Lucy: "It also seems obvious that Cort, Defender of the CFIDS Assn of America, is looking for a way to keep Jamie from speaking her mind about the CFIDS Assn.
Too bad, Cort. It's not working this time. Did you forget you are not on your forum where you control everything?"
Again, truly laughable.
And we wonder why people think we're paranoid nut-cases.
>Jaime you have been so honest and forthcoming with everything you and your family have been through and I wish you the best.
Lots of Love and Thank You for caring about all of us with this disease in all it forms.
Patty P