Sunday, April 24, 2011

Vote WPI & email Obama: Two Small Actions for Huge Results

Friends, these actions are important enough that I'm blogging when I shouldn't.

I pushed too hard last week (and of course we never know how much is going to prove to be too much), so now I'm paying in pain for having dared to run a couple of errands, go to a couple of appointments and write short posts a couple of times. It hurts enough to make it clear to me that it's not worth it to push. I need to conserve more of my limited activity-time to take care of myself and my two children.

Nevertheless I also need to blog right now, to let as many people as possible know immediately about a couple of quick actions that could have tremendous results. That's for me and my two children,too, just as much as it's for millions of other sufferers. I hope healthy people will take a moment to pitch in and help.

Please join me in spending a little energy on these quick actions. I believe actions both can be done from any country. If it turns out I'm wrong about that, please let me know in the Comments and I'll edit this. So, here are the two actions, with details further below.


Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness. 

Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.


Details for Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness.

On 21 April 2011, President Obama held a Town Hall Meeting in Reno, Nevada. Courtney Miller, activist wife of neuroimmune disease sufferer and activist Robert Miller, was called on. For a full transcript and video of the entire Town Hall you can go to Shallow Nation.  Here's a transcript excerpt of just that question and answer:

It’s a young lady’s turn. Right here, in the red. Right in front. You got a microphone coming.

Q Mr. President, my name is Courtney Miller (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that.

THE PRESIDENT: Well, let me, first of all, say that you are absolutely right that we’ve tried to put science back where it belongs. (Applause.) I am a Christian and a person of faith, and I believe that God gave us brains to figure things out — (applause) — and that we’ve got to use science to make life better for our families and our communities and this planet.
That’s one of the reasons why part of the Recovery Act was reinvesting in National Institute of Health — NIH — which does a huge amount of the basic medical research that ends up then creating so many of the scientific advances that are making our lives longer and making our lives better.
Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment. Okay? (Applause.)

Bob Miller and family have sent out an appeal for follow-up emails to be sent to President Obama. You can read that appeal in this note on Facebook from R.M.C.F.A (Rocky Mountain CFS / ME & FM Association.)

The web link for contacting the President is: and the Millers ask that we select "Health Care" in the subject line and keep our messages brief and to the point.

That was pretty easy. Now, the second one is even easier and can mean tens to hundreds of thousands of dollars for crucial research and urgently-needed clinical care for millions of patients suffering worldwide.

Details for Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.

Chase Community Giving is a program via Facebook which Chase Manhattan Bank uses to distrubute millions of dollars to worthy causes, choosing the recipients by popular vote. Every Facebook user who "likes" the Chase Community Giving page gets up to ten votes. Please cast one of those votes for WPI, the Whittemore Peterson Institute for Neuro-Immune Disease.

WPI is committed to solving neuroimmune diseases and sharing their solutions worldwide. So your vote helps the ME patient in Scotland and the patient diagnosed with "CFS" in New York, the child in Belgium with Autism Spectrum Disorder, the mom in Spain with Fibromyalgia and the veteran in Montreal with Gulf War Illness.

WPI is integrating its research wing with its patient clinics and sharing information with researchers and clinicians worldwide, to get as many answers as possible out to as many patients as possible, as quickly as they can. The opening of the clinic has been stalled by lack of funding but a generous foundation grant from NV Energy is going to help, as does every donation of a dollar, a pound or a Euro in the Count Me In campaign.

One foundation grant and thousands of individual private donations won't be enough. It's rare that we have an opportunity to influence the awarding of a gigantic foundation grant, but that's what we get to do through Chase Community Giving. WPI is competing for $20,000 in round 1 of voting, and will compete for up to $500,000 if it advances to Round 2.

So the quick action is this---and if you don't have a Facebook account please consider taking a moment to create one, even under a pseudonym, to help along this excellent cause---start by going to Chase's page on Facebook.

Now, press "Like." (You can always "Unlike" later if you want to.)

Next, go to where the voting happens: 

In the search box labeled "Find Charities...." on the upper-mid-right of your screen, type in the words: Whittemore Peterson Institute.

That gives you a link to a page with a bit of information on WPI, and a nice big button labeled, "Vote." Press the Vote button and you're done!

Of course it would be great if you would also share both of these actions with all of your contacts, asking that they, too, send an email to the President and cast their Chase vote for WPI. These actions take so little time and could hold so much promise for millions who, like me, spend a lot of time in bed with their pain, unable to write a blog post. That is, people in the situation I'll be in, a couple of hours from now, as I pay for writing again.

Thanks so much, and please increase global happiness: Enjoy every moment of pain-free living you can get.

EDIT: Goes to show how fooled I can be.

President Obama is far from walking his progressive talk. Meanwhile, WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

Wednesday, April 20, 2011

Help Theda Myint

The amazing thing about being a part of a neglected patient population, is how, unsupported as we are by the medical establishment, we rally to support one another. Last night I got the word about Theda Myint. Though nearly done-in I immediately shared the information I'd received via Facebook and Twitter. This morning I wrote a letter. Now I need a rest, but I want to share the information here and perhaps motivate more people to get involved. Here's what I wrote:

(Honorable Prime Minister Gillard;)
(Honorable Minister Hames;)

I am writing from California, out of concern for the care of Theda Myint. Fellow ME patients around the world were shocked by her transfer from the emergency ward, where she was finally getting some pain relief, to a psychiatric ward.

ME is not a psychiatric illness, but as with any chronic pain illness such as cancer or AIDS, unremitting suffering does cause patients all too often to make attempts on their own lives. Relief of symptoms is the best way to save lives. Ms. Myint, in being confined to the psychiatric ward, was not only given inappropriate treatment but was denied the treatment and diet that could better support her through this complex illness.

While we await reasonably funding of appropriate biomedical research and long-overdue identification of the pathogens at the root of the disease, ME is best treated with a highly-individualized program of pain relief and symptom management.  A wide variety of medicines and dietary approaches are prescribed for ME patients' physical distress, with in some cases the major problems being cardiac weakness and POTS, in others neural pain, or insomnia, gluten intolerance, or mitochondrial malfunction... or all of the above and more: a whole panoply of possibilities that manifest differently in each individual patient.

The right treatment approach is not only different from one patient to another, but can differ in the same patient over time, so that a treatment plan takes much patience and skill to develop over time and may involve coordination of complimentary Western and Eastern medical traditions, coordination of varied practitioners and clinics.  To suddenly wrest a patient from this process and consign her to psychiatric care makes as much sense as removing a cancer patient from the care of an oncologist and assigning him instead to a podiatrist.

Too many lives have been lost already through the psychiatric mismanagement of ME. Internationally, patients, doctors, researchers, and advocacy organizations are watching and will not stand by and see another ME sufferer consigned to the snake pit of inappropriate classification. Psychiatric treatment has its place in psychiatric illness, but ME is a neuroimmune disease and its mis-assignment does no favors to the understanding of physical or mental illness. Treatment of ME as a psychiatric disease, kills patients.

Researchers at the University of Nevada, Reno, quite near my home, and around the world, are taking great strides in the understanding of physical processes in ME.  I trust that you'll do everything in your considerable power to see that the progress of ME treatment is not sent backwards in your country, at this time of such great opportunity and advancement. Please use your office to insure that Theda Myint is allowed to pursue her own best individual treatment, and that while she hangs on from one painful day to the next, your government fund to the maximum extent possible biomedical research in ME.

(Creek Feet)

I welcome anyone who wishes to use or adapt my letter. There's another one you can use, written by fellow patient Kati Debelic, here:

The links for contacting the PM are here:

 For contact info of Health Minister Hames go here:,+Kim+Desmond

The article that alerted the patient community to Theda's predicament:

And now off I go for what's now a doubly-needed rest, with a heart full of thanks to the journalists who are more and more often helping to publicize the awful predicaments of ME patients, and with gratitude that I'm a part of such a wonderfully active and caring community of patients worldwide. We are not going to just go away, and we will see our way to appropriate treatment, together. Healthy folks, we could use any help you can give to raise awareness and demand funding for the research of this debilitating and infectious disease.

Monday, April 18, 2011

Email Testimony to MECFSAC

Dear ME-CFS Action Committee:

On September 14, 2010, I sent my heartfelt and painstakingly-composed input for your last meeting. This time, as preparations are underway for another meeting, I am too sick to write.

My two teen-aged children are also still sick. Our lives are still on hold, except for the pain part, which proceeds vigorously.

Not much has changed since I wrote in September so maybe you could just re-read the email I wrote then. Same message: we patients continue to be sick and we need action. We don't want more people to get sick and join us in this hell. But since I last wrote, more did. People always get sick. What can you do, eh?

Oops. There is the one important thing that changed. I heard that the committee has changed its name from CFSAC to MECFSAC.  And the A now stands for ACTION, right? Good.


~~~ below is what I wrote in Sept ~~~

To Wanda Jones, Executive Secretary of the CSFAC, Kathleen Sibelius, Francis Collins, Thomas Frieden and Elizabeth Unger:

I am very ill and you are very busy so I won't take up much of your time with my contribution to the public testimony for the upcoming CFSAC meeting.

Another reason for keeping this brief is that today is my daughter's 17th birthday. I want to devote what energy I can to making this as pleasant a day for her as possible. This is the 4th birthday she has been ill. Imagine spending your 14th, 15th, 16th and 17th birthdays---and all the days between---lying in bed: your entire span of high school years lost to constant pain.

There's so little I can do to provide comfort as I also am ill, unable to work and provide the comforts that a healthy parent can bring to a sick child, from pleasant distractions to decent medical care. In any case, there has been no decent medical care, no appropriate proven treatment, for people with our illness. But now at last promising treatment is at hand.

There is no time for us to wait. Every day that funding is delayed is another day I don't work. Every day wasted on redoing the same old studies, retracing the same old research steps, re-positing the same worn-out theories, is another day that my daughter lies in bed in intense pain.

The change has got to happen now for us and for millions like us. We need you to use your knowledge and positions now to make that change happen.

Not only is the link of ME/cfs to MLVs strong, not only has the research been confirmed, not only has the new research strengthened the initial evidence, not only has XMRV been proven susceptible to antiretroviral drugs already approved in treating HIV infection, but beyond all that people who have been able to do so have tried HAART and similar antiretroviral treatment and they have improved.

Can you imagine functioning for years and years at 40% of normal activity? Think of any action you feel responsible to take, anything you enjoy doing, anything you dream of doing, and cross it off your to-do list. Wash dishes? Take a vacation? Make a difference in your community? No, no, and no. Lie down and endure the pain. Can you imagine living like that?

If someone said that a drug already in use for other illnesses might restore you to 80% activity in mere months, would you not wish to try that drug? Or would you soberly insist that clinical trials and prescription approval be delayed until the pathological mechanism of the retrovirus was fully understood and independently confirmed in double-blinded studies at multiple research facilities and brought to publication and subjected to further debate?

Suppose it was your child lying in the next room, bravely trying not to worry you by moaning or complaining? I am sure you have both the compassion and the imagination to see the need. If I were well enough I would be standing right in front of you today making this demand on behalf of my child, myself, and all of us many millions, if that would make any difference. But you don't need us to stand in front of you. You know what we are all saying to you, and to our doctors, and to the press, and to our elected representatives.

Fund Clinical Trials Now.

Thank you for your attention to my brief appeal: I hope to give my daughter good news after your committee meets.