January 2011

Posted by Cort Johnson

The CAA – a Timeline – Events and Finances of the Past Ten Years.

via Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising – CFIDS Association Event Timeline.… Read More

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Posted by Cort Johnson

Check out an overview of the CAA’s activities over the turbulent first decade of the 21st century…their hits, their misses, their ups, their downs…..

via Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising – CFIDS Association – the last Ten Years.… Read More

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Posted by Cort Johnson

Check out the  comprehensive CFIDS Association Interview as  former Chairman of the Board Jennifer Spotila talks about the organization past and future, its tangled association with the CDC, why it made some the decisions it did and more.

via Chronic Fatigue Syndrome ME/CFS News From Phoenix Rising – CFIDS Association Interview with Jennifer Spotila.… Read More

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Written by Jody

4926-Turp.jpgI’ve written a book review and posted it on empowher.com
Here is a link –

“Elizabeth Turp’s Book “Chronic Fatigue Syndrome/ME”: A Review”

Here is Jody’s review

Elizabeth Turp has written a book called “Chronic Fatigue Syndrome/ME” for sufferers of CFS/ME and the people who care about them. A book on Chronic Fatigue Syndrome/ME is a challenge for any writer because CFS/ME is a complex illness for which insufficient research has been done to this point.

The ME stands for myalgic encephalomyelitis, another name used for this condition.
CFS/ME is a life-stopping illness that can ransack decades of the sufferer’s life, affecting their ability to think, to breathe, to stand on their feet.… Read More

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Posted by Cort Johnson

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Written by sproggle

4864-ActionNow.jpgI’d really appreciate it if members of this forum could get behind this campaign, we need as many participants as possible to give us the best chance of receiving a meaningful response and not a useless standard reply!

The full details, which I have posted below, can also be seen in an open Facebook note on the new “Action Now” page http://www.facebook.com/note.php?note_id=160207910694219

Details on the previous stages of the campaign can be viewed here(you do not need to be a Facebook member): http://www.facebook.com/notes/action-now/about-the-policy-change-now-campaign/159735414074802Read More



You don’t need to have participated in previous campaigns or be a UK resident to take part.

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Posted by Cort Johnson

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4873-ResultsII.jpg2000

  • Citing stagnation in the field, CAA stops receiving or funding grants and instead launches a series of scientific symposium designed to open up new avenues of research. They include “Does Dysautonomia Play a Role In the Pathophysiology of This Complex Illness “, “Neuroendocrine Aspects of CFS “, Immunological Aspects of CFS “ and “Promising Diagnostic Tools and Processes”
  • The Annual Report cites almost 5,000 donors
  • Creates traveling Education Exhibit. Overall Association spends $800,000 on physician education
  • A new publication “ the CFS Research Review” is sent out to over 7000 physicians, government scientists and health professionals free of charge four times a year and to Association members.
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Posted by Cort Johnson

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4872-jennie.jpgJennifer Spotila was Chairman of the Board of the CFIDS Association of America from 2008-2009 and is a Board member today.

Companion Articles

Can you briefly tell us your story with chronic fatigue syndrome (ME/CFS)?

Jennie’s Story – I was working as an attorney in Philadelphia when I got sick in October 1994. My doctor insisted I just had “a virus” and so I pushed myself very hard to work through it. After three months, I asked for a one-month leave of absence from my firm.… Read More

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Posted by Cort Johnson

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4863-McCleary.jpgIn 2001 Marc Iverson resigned from the CAA Board citing different priorities and a different vision for the organization. He envisioned an organization that would become a hub for patient activities on the internet and had his view prevailed presumably we would have seen forums, blogs and physician and treatment review sections and things of this sort.

Companion Articles

Kim McCleary, on the other hand, envisioned an organization that would build a voice for chronic fatigue syndrome with important policy makers such as the medical community, the media and elected officials and leverage federal assets to get the word out.… Read More

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Posted by Cort Johnson

What is ME/CFS in Vermont like?’ Invisible’ suggests that it’s much like it is in the rest of US. A struggle for health and a struggle to maintain ones sense of mental well-being in the face of a medicals community’s disregard and often disdain. Vermont does have something or rather someone who is different, though, and that is Rik Carlson – someone who’s felt compelled to document the CFS Community’s story there. He did it first in his autobiography, Monkeys Have Wings and now he’s doing it on film.

The movie starts off with a solitary man walking a dog disappearing into a woods…a poignant image for a disorder which causes many people to disappear from work and from the community they used to frequent as they move deeper into the entangled and largely solitary woods that make up their world of CFS .… Read More

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Posted by Cort Johnson

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4852-PandoraII.jpg(From Muffin) – This petition is quite far-reaching and outlines what patients expect from the new CDC/CFS head, Dr. Unger. The petition authors made sure to include communication to the very senior players so that the petition will have impact. It is a well written document and has ideas that we ME/CFS patients have long agreed upon. Read the text below and then please go to the Change.org link and sign.
If we want change from Dr. Unger at the CDC/CFS program, then TELL her bosses what we want. This petition does just that.… Read More

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Posted by Cort Johnson

Dan Moricoli is doing some great stuff at the ME/CFS Community Center. (Look at the Scientific Committee members!) Check out this video of an Olympic Champion espousing the need for more support.

Olympic Champion Laura Kraut on ME/CFS and the ME/CFS Pocket Money Research Fund.

The ME/CFS Champions Campaign seeks to raise public awareness of ME/CFS, a disease more prevalent than breast cancer, as well as raise money for much needed research. The money raised by the fund will be distributed within set guidelines by the Scientific Committee.

The Scientific Committee members consist of some of the leading ME/CFS researchers in the world.… Read More

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Posted by Cort Johnson

Clinical Study of Simplified Yasko Protocol for CFS/fibromyalgia

Rich Van Konynenburg, Ph.D.
Independent Researcher/Consultant
richvank@aol.com

Neil Nathan, M.D.
Gordon Medical Associates
Santa Rosa, CA

Yasko Protocol Conference – Boston
July 30-August 1, 2010

• Type: Open-label clinical study
• Setting: A single private practice in Springfield, Missouri
• Informed consent: Patients signed forms after explanation of the study and its possible risks.
• Duration of treatment: Six months (However, note that after the 6-month study period, individualized treatments were added to the basic protocol for an additional 3 months.)
• Outcome measures: Objective testing and self-rating of symptoms (Details are given later in this paper.)
• Restrictions on medications and additional supplements: None, except that they and their dosages were not to be changed during the study without the knowledge and agreement of one of us (NN).… Read More

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Posted by Cort Johnson

Application of the Yasko Protocol to the Treatment of Chronic Fatigue Syndrome

Rich Van Konynenburg, Ph.D.
Independent Researcher/Consultant
richvank@aol.com

Neil Nathan, M.D.
Gordon Medical Associates
Santa Rosa, CA
info@gordonmedical.com

Yasko Protocol Conference – Boston
July 30-August 1, 2010

____________________________________
Disclaimers

1. People undergoing treatment for chronic fatigue syndrome as discussed in this talk must be under the care of a licensed physician.
2. Some of what will be discussed in this talk is hypothesis—unproven theory. I will try to distinguish between what is hypothesis and what is well established and considered to be scientifically true at this time.… Read More

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XMRV Buzz Jan 18th and 20th

January 22, 2011

Posted by Cort Johnson

  • Dr. Mikovits Talks – Part II - we now have two accounts of Dr. Mikovits talk. Lannie has finished up her account and Paula Carnes has provided her overview as well. As often happens both contain bits the other does not. Paula reported Dr. Mikovits said that 30% of adolescents who have tested positive for XMRV will go on to develop a severe case of infectious mononucleosis (glandular fever in some countries) and will not recover; ie will go on to develop CFS. Dr. Mikovits also reports that, while ARV’s have not been the silver bullet hoped for, that as patients on them do improve a bit – antibodies to XMRV start showing up – indicating that their immune functioning has improved.
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Posted by Cort Johnson

In an exploration of be-ing it pretty quickly becomes clear that we are never alone in this world…we are always, always ‘in it’ with something. Whether it’s how our body feels or our thoughts about the person at the grocery store or the dishes in the sink or our general situation we’re always in the world ‘with something’. We’re always in a ‘dance’ with something.

The Right vs Wrong World – Generally we interpret what we are in a dance with by deciding if its right/wrong. If it’s right then we’re OK with it but if we’re in a ‘dance’ with something that we interpret is ‘wrong’ our minds go into overdrive – registering complaints, anger, frustration, etc.… Read More

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Posted by Cort Johnson

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PR member mojoey has created Healkick, a group that aims to provide a medical, social, and professional network for 40-and-under young adult patients with neuro immune disease (ME/CFS, fibromyalgia, chronic lyme, atypical MS, MCS, and mold illness.)

In order to join, please go to groups.google.com/group/healkick (you’ll need to sign up for a google account if you don’t already have one)

I asked Joey why he started this group:

Quote:
During the 5 years I’ve been sick, I’ve always wanted to meet other patients around my age (Joey is a 27-year old male ME/CFS patient).

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Written by Kelvin Lord

Treatment #2
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“In times of sickness the soul collects itself anew”
Latin Proverb

I arrived at the medical center this morning a little before 10:00AM with a slight headache , because of the drive, and because as a former-perfectionist, I hate to be late. My plan was to get there by 9:30AM but Baku, my cab driver from Senegal, was messing with his GPS and we didn’t take the most direct route. He was such a charming fellow I didn’t get out my map or complain. I did learn, however, that if it comes down to trusting a GPS or asking a cop on the street what is the shortest route somewhere, I’ll take the police officer’s word every time.… Read More

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Written by Kelvin Lord

Treatment #3

Treatment+Three+002.jpgThree down, scores more to go! Today as before, Gwen got the needle in quickly, and strapped me up to 200ml of Ampligen, this time pushed through in under 35 minutes. Today I followed that up with a saline infusion, recommended by many, and it seemed to actually give me a boost! So far, so good.

Because so many have asked, I’ll use this time to describe how I got here.

My journey with this disease started 25 years ago, in the San Fernando Valley in Southern California, when seven of us working at the same place all were slammed with what we thought was “one of the worse cases of flu” we’d ever experienced.… Read More

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Posted by Cort Johnson

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4816-XMRVnodules.gif(Thanks to Paula for allowing us to post her review of Dr. Mikovits Talk here. You can find the original post at her blog here. )

I made the long trek from Las Vegas to Santa Rosa hoping to find answers to mysterious questions such as “What is the origin of XMRV?” or “Why would a retrovirus spread like an epidemic at Incline Village in a high school?” Do I have more answers now? I do know I made a wise choice to drive from Vegas. My trip was more fun than Dr.Read More

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Written by Kelvin Lord

Treatments #13 and #14
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I’ll get to the weed-killer analogy quickly. But first, allow me a little celebration- today marks my eighth week on Ampligen, and I’ve now officially entered the “plateau” phase of my treatment. Whereas at first I was seeing almost weekly improvements in things like my sleep, appetite, and other empirical data (see previous posts) now there really is nothing new to report. My doctors and nurse, as well as other patients, have all told me that the next “bump” in dramatic improvement will come as enter the 4th month of treatment – so now I just have to be patient.… Read More

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