October 2010

Posted by Cort Johnson

4367-Friedberg..jpgDr. Fred Friedberg, President of the IACFS/ME, requests that CFS/ME professionals and patient-oriented activists write letters to the CDC to Dr. Stephan Monroe with copies to Dr. Thomas Frieden regarding the selection of a new Chief of the Chronic Viral Diseases Branch at the CDC. See below for Dr. Friedberg’s request which is posted with his permission. (Thanks to Pat Sonnett of the Miami CFS Support Group)

Open Letter to CFS/ME Professionals:

Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program.… Read More

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Breaking Out!

October 28, 2010

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Written by Kelvin Lord

prison-escape1.jpgThere was a prison breakout in the USA this past weekend of historic proportion. And like most escapes that require patience and tenacity, this one took 10 long months of preparation. But when the time came, the escapee acted almost without thinking, and ran with freedom in his eyes, and hope burning in his heart. No, this isn’t the story of a convicted felon escaping from the County jail. Although it did have to do with a guy escaping from his incarcerated state.

This is the story of me, doing something absolutely insane this past weekend.… Read More

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Posted by Cort Johnson

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Written by muffin

4359-WashingtonPost-P__114.jpgThe Half Page Ads for ME/CFS in the Washington Post Are Ready for Your Feedback

Please go here to check them out: http://mcwpa.org/?p=166

Go here to give your feedback: http://www.forum.mcwpa.org/viewforum….

Look under “Print Advertisements” and then look for “Ad Samples.”

If you have not registered, you will need to do so. After registering, you may have to enter another password: “action” to access the topics.

Feedback time will end on October 31 at midnight EST.

Don’t forget to donate here: http://www.causes.com/causes/511536?m

Look at the top left for the donate button.… Read More

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Posted by Cort Johnson

CDC, Dr. Unger and ME/CFSDr. Unger’s ‘Job Interview’ by the CFSAC Committee

The new CDC CFS chief should be announced fairly soon and Dr. Unger is one of the candidates to lead it. With that fact in mind the Committee at times asked her some fairly pointed questions.

A Biological Basis – Really? Dr. Unger stated that ‘there has never been any doubt in the CDC program that there is a biological basic for this illness” which has (or at least had) it’s basis in fact. Even with the sexual abuse studies the CDC tied childhood abuse to cortisol problems (and a substantial portion of the study participants had neither) but it’s also true that the CDC has changed in the past couple of years.

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Posted by Cort Johnson

IACFS/ME Chief Dr. Friedberg on the CDC and CFS

Dr. Fred Friedberg, President of the IACFS/ME, requests that CFS/ME professionals and patient-oriented activists write letters to the CDC to Dr. Stephan Monroe with copies to Dr. Thomas Frieden regarding the selection of a new Chief of the Chronic Viral Diseases Branch at the CDC.  See below for Dr. Friedberg’s request which is posted with his permission. (Thanks to Pat Sonnett of the Miami CFIDS Support Group)

Open Letter to CFS/ME Professionals:

Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program.… Read More

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Posted by Cort Johnson

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4358-cdcHeaderLogo..jpgDr. Unger’s ‘Job Interview’ by the CFSAC Committee

The new CDC CFS chief should be announced fairly soon and Dr. Unger is one of the candidates to lead it. With that fact in mind the Committee at times asked her some fairly pointed questions.

A Biological Basis – Really? Dr. Unger stated that ‘there has never been any doubt in the CDC program that there is a biological basic for this illness” which has (or at least had) it’s basis in fact. Even with the sexual abuse studies the CDC tied childhood abuse to cortisol problems (and a substantial portion of the study participants had neither) but it’s also true that the CDC has changed in the past couple of years.… Read More

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4357-FeroWeb..jpg(Pat Fero, the Executive Director of the Wisconsin ME/CFS Association used Freedom of Information Act requests, the online NIH Report Database, minutes from the CFSAC meetings and government to uncover a startling pattern of disregard to CFS by the NIH
Some highlights:

  • While the NIH’s Budget doubled over the last decade funding for ME/CFS remains at 1992 levels. That’s bad! But it’s actually even worse than that because a dollar is worth about half as much as it was 1992; in real terms the NIH is spending half as much now on ME/CFS as it did almost twenty years ago.
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Posted by Cort Johnson

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XMRV and CFS in the balanceLooking back it was just another week with XMRV; a very intense one for sure, but just another up and down week for the virus that has captured our attention for the last year.

Lenny Jason came up to the lunch table at the break and asked what we thought of the presentations. A bit overwhelmed by Dr. Weiss’s presentation I said “It was mostly about contamination but I thought he did well”. Lenny just replied “I wish Dr. Mikovits had been here….” And two days later there she was, just a hop away at the New Jersey CFS Conference, giving her side of things and everything seemed well again.

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Posted by Cort Johnson

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4310-RobertMillerCFSAC__.jpgFrom “Time for Action” organizers: Bob Miller, Rivka Solomon, Charlotte von Salis
Contact: Bob Miller
bobmiller42@msn.com

The “Time for Action” campaign was successful. Congratulations to patients, their families and friends!

== THE ACTUAL NUMBERS ==


Over a two-week period, ME/CFS patients, their families and friends sent more than 2,000 emails to NIH Director Collins and NIAID Director Fauci. Also, a large but uncountable number of calls were made and faxes were sent. Patients used their wonderful creativity and sent everything from our suggested one-liner to hand-drawn cartoons to poignant medical histories.
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(Thanks to Jennifer Spotila and the CFIDS Association for allowing us to post 4306-e..jpgthis inquiry into a complicated issue in ME/CFS – ‘exercise’ You can find the original copy of the article here.)

Exercise is a four-letter word to many people with chronic fatigue syndrome (CFS). Every patient has been told by a doctor, family member and/or friend that exercise would help him/her feel better. Every patient has tried to be physically active in some way and experienced the same end result: relapse and post-exertional malaise (PEM) that makes them feel much worse, not better.… Read More

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Posted by Cort Johnson

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4293-LobbyDay_Capitol___7.jpgI was talking to Dr. Stuart LeGrice of the National Cancer Institute when all of a sudden he said

I don’t think this “What Have You Done For Me Lately” Campaign is helping. I don’t need to have Dr. Collins call me and ask me what are you doing for CFS“…………..
The Campaign is WORKING
Keep the emails and phone calls and faxes coming in

Quote:
From Bob, Rivka and Charlotte

On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes.

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Posted by Cort Johnson

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4288-LobbyDay_Capitol___7.jpgFederal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and it’s an important one. (See agenda: http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html )

Day One
The Science

At first glance the highlight of the meeting appears to be the“Science Day’ on Tues, and with it’s mix of Dr. LeGrice talking on XMRV, Dr. Light’s on his startling sensory receptor work, Dr. Lerner on anti-viral treatments, Dr. Klimas’ take on the immune system and Dr. Jason on – well, whatever no he wants to talk on (it’s always good J ); in this case“Other Biological and Non-Biological Measures of Change”, it’ll be intriguing.… Read More

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Posted by Cort Johnson

4277-WellBottom..jpgAs the CFSAC meeting and our continual quest for real funding gets underway it’s important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders they’ve decided are also worthy of little funding. Remember being put in math class as you entered Junior High based on your testing scores; you could either be in the accelerated class, the average class or the behind class. Let’s take a look at our partners in the ‘behind class’.

There are about 30 disorders that are more or less the clear bottom feeders at the NIH – stuck at less than 15 million dollars a year in funding.… Read More

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What’s Next for XMRV?

October 8, 2010

Posted by Cort Johnson

MLV's, XMRV and the Subsets in CFS

The XMRV International Workshop is over, the Alter paper was finally published….we seem to be in a kind of lull….what is next for XMRV and ME/CFS? Of course anything could happen at any time (and has) but we do have some clues.

First, though, let’s take a look at where we are. The XMRV Studies page on Phoenix Rising (check out the new colored coded version) lists about 34 past, present and possible studies (and is, no doubt, missing a few.). We have the results, one way or another, for 14, believe it or not.

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Posted by Cort Johnson

(The CFSAC meetings are the only time during the year when ME/CFS advocates sit down and prod federal officials to do the right thing. We all know the statistics – we know the federal government has basically been pretending we don’t exist for decades. The action Bob, Rivka and Charlotte created initiates a new brand of advocacy effort that tells them that we’re not going to sit still for more of the same.)

From Bob, Rivka and Charlotte

On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes.… Read More

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Let’s do it again!‏

October 3, 2010

Posted by Cort Johnson

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take.jpg

American Express is offering $200,000 to five different charities every three months. People will be able to vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2011, but they are accepting nominations now. To be eligible, a non-profit organization must be nominated by many people, meet the American Express requirements and be approved by the TakePart Advisory Board.

They have no requirements on the size of a charity’s balance sheet – only on the scope of their outreach programs, efficacy, mission goals and accomplishments.… Read More

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Posted by Cort Johnson

XMRV and CFS: Batter Up!Dr. McClure has been publicly pretty clear that she believes XMRV is not present in ME/CFS. Last week she hinted about an article soon to come out that will explain just how contamination caused XMRV to pop up in ME/CFS patients. Now to her credit she and her Imperial College retrovirologists have put their pen where her mouth has been (what an image!) and pitched the Alter/Lo team their best hard balls – in the letter column of the PNAS journal, for all to see.

One debate standard is to never ask a question whose answer you might not be able to handle.

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Written by Kelvin Lord

4149-dr_lapp..jpgTo give you an idea how long Chuck Lapp has been serving the CFS/ME community, think about this – Before Steve Jobs invented the Macintosh Computer, Dr. Charles Lapp was contacting the CDC about a mysterious new illness. Dr. Lapp has been treating and specializing in CFS patients for over 25 years. He was one of the founders of the CFIDS Association in Charlotte, and continues to be one of the leading physicians in the field, always on the cutting edge of new therapies and drug trials.

In the USA today, only 2 physicians are administering the drug Ampligen, Dr.… Read More

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Finally Getting ‘IN’

October 1, 2010

Posted by Cort Johnson

Fight for XMRV and CFS ResearchXMRV has turned the ME/CFS world upside down and in a very good way. In the past year a‘cast-out’ disorder has shown signs it may be getting ‘in’; getting into major research facilities, getting into the discussion of major officials, getting into the groove that most diseases participate in…. in short its shown some signs of being treated like a real disorder that makes people sick.

SOME GOOD SIGNS

New Researchers – Nowhere has this been better illustrated than in the research community. NCI Lab Chief Dr. Ruscetti is now clearly wholly committed to studying ME/CFS (a disorder he’s thinks is ‘fascinating).

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Posted by Cort Johnson

What is really possible in ME/CFS? We are so embedded in what hasn’t happened, in our dark history – in what hasn’t happened or what did happen that shouldn’t have happened – that we hardly take time to think about the other side of the coin – what’s possible? If we were put aside our history for a moment and just look at the bare facts of this disorder and asked ourselves what is possible what would we find?

I think we would find promise…We would find millions of people in the most developed countries of the world without research or treatments.… Read More

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