November 2011

Posted by Cort Johnson

It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not innovative. They are determining

  • if ME/CFS patients brains are functioning as anerobically as their bodies seem to be
  • if standing up causes a flare of free radicals that causing you to tip over, grow dizzy or at the very least ditch several points of IQ
  • if exercise causes CFS patients gut microflora to go bananas – spiking an immune response – and causing post-exertional fatigue
  • if exercise causes sensory, immune and endocrine genes involved in pain, fatigue and blood vessel functioning to spike resulting in pain, fatigue and you know the rest
  • if immune and other gene expression networks hold the key to subsetting CFS
  • a computer program that develops novel theories for CFS using existing research

That’s not all.… Read More

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Posted by Cort Johnson

In Part II of the XMRV section of the conference we look at the Coffin/Mikovits presentations, Hanson’s update on her XMRV work and look at the recent XMRV research findings.

The pMLVs Strike Out – Hanson Disavows Former Results


“The sensitivity of the PCR assays used requires extreme caution in interpreting results

Dr. Maureen Hanson”

Background – Dr. Hanson’s was one of two labs (Lo/Alter) to find not XMRV but closely related murine leukemia viruses called pMLV’s, in CFS blood samples. Dr. Mikovits heralded the findings as proof that a family of murine leukemia viruses were present in chronic fatigue syndrome but the their  similarity to endogenous retroviruses raised a red flag.… Read More

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Posted by Cort Johnson

Pt. IA: XMRV: the Big Test – the Blood Working Study  (Taken From the Ottawa Conference/CFIDS Association Webinar)

The Blood Working Group  was  a large group (25) made of federal officials from various agencies (CDC, NIH, FDA), the Red Cross, several laboratories including the WP, several Universities and  put together just a month after the XMRV Science paper published in Oct 2009.

The CAA brought together three members of the BWG – none of whom were employed by the federal government to explain the results in their latest webinar. They  were Graham Simmons, PhD of Blood Systems Research Institute, Michael Busch, MD, PhD of Blood Systems Research Institute, Steven Kleinman, BSc, MD of University of British Columbia

The culmination of the BWG’s efforts was a blinded test involving 9 well known labs including the WPI, Abbot, two FDA labs (including Lo/Alter), the NCI Ruscetti lab and Gen-Probe that examined 15 CFS patients from the WPI and Lo/Alter and X controls.… Read More

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Posted by Cort Johnson

Dr. Judy Mikovits has had a difficult couple of months. First the BWG study indicated the tests she developed for XMRV were not valid, then evidence of contamination resulted in a partial retraction of the original Science paper, then she was accused of doctoring a photo at a conference and in the original Science paper prompting several investigation, then she was terminated from her job at the WPI, then she was served with a lawsuit claiming that she had stolen data from the WPI and since last week, she’s being in the Ventura County jail waiting arraignment as a fugitive from justice.… Read More

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Posted by Cort Johnson

We started out with seven CFS non-profits in the running for $175,000 in the Chase Community Giving Contest. We knew the contest was going to get really volatile in the last couple of days and it has with four organizations dropping like rocks.

With only 22 hours left in the contest only three organizations appear assured of taking home any money; the IACFS (AACFS), the CFSKnowledge Center and Mass CFIDS.

Rocky Mountain and Wisconsin have dropped precipitously and are in the last few hours have dropped out of the top 100 (and the $25,000 prize). The fine New Jersey CFS Association which has done so much over the years is now off the leaderboard as is the exciting Enterovirus Foundation devoted to studying what may be a key culprit in CFS.… Read More

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Posted by Cort Johnson

The RMCFA is one of six CFS organizations in the running for from 25K in the Chase Community Giving Contest running until Aug 22nd. Chances are,though, that after being in contention for 2 weeks, on the last day of being in the Chase Community Giving contest, the RMCFA will drop out of the top 100 and come up penniless.

We don’t want this to happen.  We have 22 hours to make sure that it doesn’t happen.

Incorporated in 1991, the RMCFA provides regular speakers, a monthly email newsletter and an Action Center. It’s Executive Director, Mike Munoz, was a co-founder of the Coaltion4ME/CFS – a national group of ME/CFS non-profits dedicated to improving conditions for people with ME/CFS.… Read More

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Posted by Cort Johnson

The Chase Community Giving Contest is almost the only way for penny-poor CFS non-profits to come up with easy cash. With four days left in the contest two non-profits – the New Jersey CFS Association (#93) and the Enterovirus Foundation (#81) – are hanging on by the skin of their teeth. The next couple of days will make or break them.

Let’s take a look at these two organizations

The New Jersey CFS Association

A Leader Struggles – That the NJCFSA is struggling in the Chase Contest is a bit strange since it may be the most dynamic state CFS non-profit support group in the country.… Read More

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Posted by Cort Johnson

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The Chase Community Giving Contest is virtually the only way for penny-poor CFS non-profits to come up with easy cash. With four days left in the contest two non-profits – the New Jersey CFS Association (#93) and the Enterovirus Foundation (#81) – are hanging on by the skin of their teeth. The next couple of days will make or break them.

Let’s take a look at these two organizations

The New Jersey CFS Association

A Leader Struggles – That the NJCFSA is struggling in the Chase Contest is a bit strange since it may be the most dynamic state CFS non-profit support group in the country.… Read More

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Posted by Cort Johnson

Only Four days left for Chase Community Giving and two of our most important CFS non-profits are in the running.  Check out why your vote for these organizations will make a difference for ME/CFS.

CFS Knowledge Center  The CFSKnowledgeCenter is actually two sites: a thriving Community Center with blogs, research surveys and CFS support groups and a knowledge base containing articles and video’s

The CFSKnowledgeCenter already easily had the biggest ME/CFS video collection on the web at but Dan Moricoli, the owner of the site, has taken it one step further and has been collaborating with Dr.… Read More

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Posted by Cort Johnson

Is chronic fatigue syndrome an autoimmune disorder? Could chronic fatigue syndrome be an autoimmune disorder? The Fluge/Mella Rituximab study was effective in at least temporarily reducing the symptoms of about 60% of the chronic fatigue syndrome patients in the study – a fact that no doubt shocked many who considered CFS purely a neuropsychiatric disorder.

Rituximab started out as a chemotherapy drug but is now being used effectively in a variety of autoimmune disorders and is being studied in even more. Could Rituximab’s success mean that a large portion of the ME/CFS community actually suffers from an autoimmune disorder?The Fluge/Mella team suggested so, stating their results indicated

“CFS may be an autoimmune disease, often preceded by an infection, and targeting specific parts of the nervous system”

Autoimmune Disorders and Chronic Fatigue Syndrome: A Short Review

An autoimmune disorder occurs when the immune system mistakes human cells for intruders and begins attacking them.

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Posted by Cort Johnson

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Wanda Jones made a difference for the CFS Community at the federal advisory committee for CFS (CFSAC). The NIH liason (FDO) to the committee Wanda was right there in the middle of things when XMRV came on the scene. Sometimes fiery, sometimes surprisingly funny, Wanda was the rock the CFSAC evolved around. She did not brook disorganization and inefficiency and got the committee organized better, pushed it and it’s agenda hard at the Department of Health and Human Services, got live videostreaming going, and then, all of a sudden she was gone.… Read More

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Posted by Cort Johnson

$250,000 or More for the ME/CFS Community?????

Is that even possible? $250,000 may be more than all the smaller non-profits ever – put together – spent in their existence – but it is possible and its happening NOW.

Chase Community Giving is at it again. In the first round – for larger non-profits- the ME/CFS Community got the WPI a cool $100,000. Last year the ME/CFS Community won PANDORA 25K.

Small Non-Profits Now – Now Chase is doing a round for smaller non-profits with even more money at stake. With 10 or more CFS non-profits voting for each other the ME/CFS Community could rack in 250K or more – that’s right 250,000 – IF we do this right.… Read More

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Posted by Cort Johnson

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Somethings gotta be done; money, lots of it was spent on XMRV but the budget for the rest of CFS is still in the tank and now we are faced with what we worried about what might happen if XMRV didn’t turn out; the rest of the medical community going on as if nothing happened…

Usually Workshops such as the State of the Knowledge Workshop for ME/CFS come with major grants. That didn’t happen for us. Instead we heard that the NIH would decide about a major grant for CFS at the end of the year when the Lipkin study was done but the Lipkin study is apparently lagging behind and every day it does so let’s ME/CFS fade from the scene a bit more.… Read More

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