February 2011

Posted by Cort Johnson

Dr. Klimas was raked over the coals recently for being a co-author of a study on stress management that brought symptomatic relief to some people with CFS. In the upset of the moment the rest of Dr. Klimas’s work – her uncovering of the central immune dysfunction in ME/CFS (NK cell dysfunction), her numerous research papers, her advocacy work as President of the IACFS/ME, IACFS/ME Board member, CFSAC member, Fair Name Committee Member and her decades of work as a physician specializing in ME/CFS, was mostly forgotten.

Now it’s Dr. Vernon’s turn to be at the end of a ‘guilt by association’ charge.… Read More

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5107-judge-with-gavel.jpgGuilty!

Dr. Klimas was raked over the coals recently for being a co-author of a study on stress management that brought symptomatic relief to some people with CFS. In the upset of the moment the rest of Dr. Klimas’s work – her uncovering of the central immune dysfunction in ME/CFS (NK cell dysfunction), her numerous research papers, her advocacy work as President of the IACFS/ME, IACFS/ME Board member, CFSAC member, Fair Name Committee Member and her decades of work as a physician specializing in ME/CFS, was mostly forgotten.

Now it’s Dr.… Read More

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Posted by Cort Johnson

CBS News was in Miami yesterday filming the Miami Coral Gables CFIDS Group meeting with Dr. Klimas. According to reports Dr. Klimas met with them after the meeting to do an interview about the PACE trial and Dr. Natelson’s new study validating a previous study finding abnormal proteins in the spinal fluid of ME/CFS patients indicating neuroinflammation.

If this is a validation of the Dr. Baraniuk’s spinal fluid study we’re in real luck because we’ve heard that his own validation of the study should be coming out shortly. Thus we may have two studies coming out one after another indicating neuro-inflammation is present in the brains of people with chronic fatigue syndrome.… Read More

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5092-cbs.jpgCBS News was in Miami yesterday filming the Miami Coral Gables CFIDS Group meeting with Dr. Klimas. According to reports Dr. Klimas met with them after the meeting to do an interview about the PACE trial and Dr. Natelson’s new study validating a previous study finding abnormal proteins in the spinal fluid of ME/CFS patients indicating neuroinflammation.

If this is a validation of the Dr. Baraniuk’s spinal fluid study we’re in real luck because we’ve heard that his own validation of the study should be coming out shortly. Thus we may have two studies coming out one after another indicating neuro-inflammation is present in the brains of people with chronic fatigue syndrome.… Read More

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Posted by Cort Johnson

The biggest and the baddest CBT/GET study has finally arrived. The UK took their best shot at behavioral therapies for ME/CFS in their mult-million dollar, multi-center, multi-year, 600 plus patient PACE Trial. This, the biggest, most expensive and rigorous treatment trial for CFS ever, had taken years to plan; it’s program alone was hundreds of pages long.

The stakes were high. The big Belgian government funded CBT study to end all CBT studies failed miserably last year leading CBT advocates to sputter that the trial had not failed but that expectations were simply too high – as if a return to health was an unreasonable expectation.… Read More

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5077-PACE.jpgThe biggest and baddest CBT/GET study has finally arrived. The UK took their best shot at behavioral therapies for ME/CFS in their mult-million dollar, multi-center, multi-year, 600 plus patient PACE Trial. This, the biggest, most expensive and rigorous treatment trial for CFS ever, had taken years to plan; it’s program alone was hundreds of pages long.

The stakes were high. The big Belgian government funded CBT study to end all CBT studies failed miserably last year leading CBT advocates to sputter that the trial had not failed but that expectations were simply too high – as if a return to health was an unreasonable expectation.… Read More

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5044-ChainWhiteW.jpgIn an abrupt break with past history, the new Chief of the CDC’s CFS research program, Dr. Unger agreed to meet with ME/CFS reps to discuss concerns about the CDC’s CFS program. Her predecessor Dr. Reeves had refused several efforts by patient reps to meet. The meeting was prompted by a collective effort by 11 patient advocacy organizations – lead by PANDORA – to marshall their forces to produce change at the CDC.
The meeting, therefore, is notable for two reasons;

a) this is the first time in memory that a large group of patient advocacy organizations have worked together to maximize their voice and it worked; Dr.… Read More

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Written by Cort

5035-ChineseDragon.jpg
The Quality of Life Blogs

This is the start of a series of blogs on Toni Bernhardt’s book “How to be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers”. I will supplement my background with a more Western approach with Toni’s Buddhistic approach – and see what happens.

Tony came down with CFS during a ‘romantic’ or at least planned for romantic trip to Paris in 2001. Unfortunately whatever she got she got on the plane ride over. I’m going to skip Chapter I and II on how much fun it is to spend your long awaited European vacation watching trashy French TV (the only kind apparently!) while stuck in your bedroom and then the progression of her illness (got better/got worse/stayed worse) in California.… Read More

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The Battle in Belgium

February 13, 2011

Posted by Cort Johnson

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Written by hildevdh

(Dark Days in Europe - Not long after Dr. Myhill was attacked (and got reinstated) two physicians in Belgium are threatened with the loss of their license as well.)

“Chronic fatigue is a rubbish-dump” – The battle for the CFS patient.

5023-Belgium.jpg Original (Dutch): http://www.standaard.be/artikel/detail.aspx?artikelid=3835C9OL&subsection=3

By Griet Plets, in De Standaard, 24 Jan 2011

Brussels – Yes or no, psychosomatic or more than just ‘all in the mind’? The discussion about chronic fatigue (CFS) rages on since many years. This afternoon the matter will be pushed to the extreme, as Francis Coucke appears before the Order of Physicians.… Read More

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Posted by Cort Johnson

Another treatment book I thought…….Dr. Teitlebaum’s books had pretty comprehensively covered the waterfront for me on that end. What more could a patient authored book offer? It turns out – a lot.

Maija Haavisto is a Finnish writer with CFS who’s health was declining rapidly when she found a drug, low-dose Naltrexone. (LDN), that stopped the progression of her illness and improved many of her symptoms. (She used a draft of the book to convince her physician to try it.)

“Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia” focuses on the pharmaceutical drugs used to treat CFS.… Read More

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Written by Cort

5016-SuzanneWigginton.jpgSuzanne is a registered hypnotherapist and masseuse with ME/CFS. She is offering a free course in hypnotherapy to one person in Phoenix. In this blog she talks about ‘acceptance’.

I do not feel well much of the time. Be assured, this is just an unbiased observation not a judgment, a call to pity-party or a martyr’s grandstand. Looking back over my life, I can admit I have persisted in illness more than I have experienced what most would claim as good health. An underlying inexplicable frailty prevails for me and daily life revolves…has always revolved…around its management with varying degrees of success.Read More

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Posted by Cort Johnson

Empty Sella Syndrome: A Proposed CFS Patient Study – We propose a study to possibly characterize the first anatomical abnormality in CFS – empty sella. Adin suggested this study based on his MRI records showing that a filled sella early in the disorder and an empty sella later on. I know of another person who’s has substantial sella abnormalities as well and their clinical picture is strikingly similar.

The sella is a depression at the base of the skull that holds the pituitary gland – the master gland of the HPA axis.

MRI’s are used to characterize sella abnormalities.… Read More

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5003-Marly.jpg“For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise.” Benjamin Franklin

Once again I am excited about what is to come in the months ahead in the NeuroEndocrineImmune Disorders (NEIDs) Community. I think this May 12, 2011 Awareness Day will be the best ever!

I am excited with some of the initiatives that are taking shape with the NIH State of the Knowledge of the Science of ME-CFS and a potential future engagement of the CDC with patient advocates in the NEIDs community.… Read More

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Posted by Cort Johnson

The XMRV finding has put the spotlight for the past year on the research side of the WPI (or the Center for Neuro-immune Disease) but that’s just half of the equation. When the Clinical side of the Center opens sometime in May it will bring an entire new entity to the ME/CFS Community…an integrated clinic/research facility.

In this interview Dr. Deckoff-Jones talks about other the side of the WPI – the Clinic side. We find out how large it is (it’s quite large!), what they hope to accomplish (quite a bit), how they plan to do it and how she hopes it will change the face of CFS treatment.

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The XMRV finding has put the spotlight for the past year on the research side of the WPI (or the Center for Neuro-immune Disease) but that’s just half of the equation. When the Clinical side of the Center opens sometime in May it will bring an entire new entity to the ME/CFS Community…an integrated clinic/research facility.

It will be more than just a much (much) bigger clinic. In this interview with the WPI’s Clinical Director, Dr. Deckoff-Jones describes a kind of central proving ground for ME/CFS treatment; a hub, basically, that the treatment field can orient itself around.
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Posted by Cort Johnson

  • Malderelli Study - the Malderelli XMRV retest study has elicited a ‘little’ controversy…:). Dr. Malderelli, in a discussion with a patient, said he was collaborating with the WPI. Dr. Mikovits, however, in several emails posted on the internet, has said neither the WPI nor Drs. Alter/Lo are or ever have collaborated with Dr. Malderelli. Dr. Mikovits also wants patients to know that the Malderilli study will take place in Dr. Coffin’s lab. From an email to a patient “She also informed me that the retesting of XMRV positive people is set to take place in John Coffin’ s laboratory and that Dr.
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Written by justinreilly

4983-Stop.jpgUPDATE: Myra McClure Stepped Down from the “CFS” SEP! We did it!
We still need to get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so please refer to my latest blog post for an easy letter you can send on that score. Again: Yea Us!.

New Post:
http://forums.aboutmecfs.org/entry.php?785-Myra-McClure-off-the-SEP!-Yea-Us!-Now-lets-get-some-actual-scientists-on-it!

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This is my first blog post ever. So exciting!

As Cort reported, the new composition of the NIH’s “CFS” panel is top-heavy with psychologists, dentists and Myra McClures. That’s right, NIH has been taking some no-cost steps to appease us, but where the rubber hits the road- the grant making process, it is showing it’s true colors once again.… Read More

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Posted by Cort Johnson

Corinne at Dr. Peterson's for ME/CFS(Corinne returns for her second Followup visit since her first visit to Dr. Peterson in Sept. 2009. She had been on a protocol consisting of saline IV’s, amino acid IV’s, procrit, probiotics and Valtrex since April, 2010. How has this former fitness instructor but now mostly bedridden person with ME/CFS been doing?….Let’s find out!)
Dr. PETERSON REVISITED: CORINNE’S FOLLOW-UP # 2, September 2010
“Off we go into the wild blue yonder, flying high, into the sky” . . . .

Yes, I was ready to try it this go around….flying to Reno.Read More

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Posted by Cort Johnson

Back to the Past – The CFS SEP Panel reverts. Seeing Dr’s Klimas, Ruscetti, Fletcher, Broderick names on the last NIH grant review panel for CFS was an almost giddy experience after watching years of dental and pain researchers sign off on (and usually decline) CFS grants.

Things have changed.  Some CFS researchers do remain but the big names are mostly gone and it’s mostly back to a panel dominated by pain researchers plus a surprise…one Myra McClure from the UK. Check out who’s on it

via Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising – CFS NIH Grant Panel (SEP) Feb 2010.… Read More

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CFS GRANT REVIEW (SEP) Meeting Roster – (2/22/2011 – 2/23/2011)

The last CFS SEP Panel, heavy with immunologists and other CFS researchers, was remarkably changed. (Unfortunately Dr. Klimas called the number of grant proposals was ‘pitiful’ – so it’s not clear how helpful they were.) The present panel is remarkably different from the last one and not in a good way. Now we have an in-between panel; it’s a mix of pain (FM ie dental) and CFS and other researchers. It’s better than most CFS SEP’s (a third of the researchers have some CFS research experience – but it’s mostly dominated by pain researchers again.… Read More

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