July 2010

Posted by Cort Johnson

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Written by Dreambirdie

HERE IT IS! FINALLY, DONE! YAY!Read More

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Posted by Cort Johnson

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3306-istanbul-sunset..jpgVeronica Di Grigoli’s (Athene on the Forums) first novel, ‘Evil Eye’, just debuted on Amazon.com in the US after getting excellent reviews in the UK. Part detective story, part character study – think Amy Tan and Jane Austin looking for clues to a child’s mysterious disappearance in Istanbul – it looks like an intriguing take on the fascinating part of the world.

Anyone with ME/CFS who publishes a book is a cause for celebration. I asked Veronica about CFS and her novel.

How long have you had ME/CFS?

I was born and grew up in London.Read More

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Posted by Cort Johnson

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3275-XMRVWorkshop..jpgInternational XMRV Workshop Lineup – Conference and Workshop lineups can tell you alot about who’s in and who’s out. I remember a CDC lecture at the Reno CFS conference; it was a nothing lecture but there it was in prime time. Why? Probably because the CDC had to be given some space.

Why is Dr. Komarof always given the end address at the IACFS/ME International ME/CFS Conferences? Is it because he’s so brilliant or because he gives such a great presentation? He does give a great presentation but I suspect that one reason he’s always given such a prominent position is that he is a middle of the road, respectable researcher who just happens to hail from Harvard.… Read More

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Magic wand anyone?

July 19, 2010

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Written by The Spitfire

3259-Magic_wand_svg..jpgI needed somewhere to come and vent about this. I am doing better, due to the shots, but I have had a set back due to my period. My period is the albatross around my neck always. It takes me from 60 to 5.

I am really sad today and need somewhere to come and let it out. I just watched the movie on Coco Chanel. I feel so inspired and so sad all in one. I always had the dream of becoming so successful and really being awesome at whatever I did.… Read More

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Posted by Cort Johnson

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Written by Carrigon

3258-sickinbed..jpgI finally found a few things that are working for me. And this is after looking for a very long time. You won’t get rich off it, but it can be built up to a week’s grocery money. It really just depends on how determined you are, how much time and effort you put into it.

I started to investigate the paid survey sites. For years, I heard tales of people making anywhere from ninety to a few hundred dollars a month off the surveys. I always thought it was bull.… Read More

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Posted by Cort Johnson

Dr. Racaniello and Dr. Bateman talked XMRV (mostly) at the CFID’S Association Webinar on Wednesday.

DR. RACANIELLO gave us a bird’s eye of retroviruses. Right now there are two models for human infectious retroviruses; HIV, which replicates madly in immune cells and sends millions of virions into the blood to infect more cells and HTLV-1, which does not replicate much and does it’s damage by turning on bad genes in the cells it is found in (sometimes turning them cancerous).

He noted that XMRV, at this point, seems more HTLV-like – it’s present in small numbers in the blood and doesn’t appear to be replicating much.… Read More

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Posted by Cort Johnson

The Central Issue Remains the Same – How to Find XMRV? – I asked Dr. Mikovits and Dr. Racaniello about XMRV and both were good enough to give their viewpoints on where we stand now. This is a long article; in it they talk about

* how to test for XMRV
* whether a different type of XMRV is present in CFS patients and how it got there
* the importance of subsets
* the history between the CDC and the WPI
* how the CDC study may have gone wrong.

Check it out here!Read More

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Written by Kelvin Lord

piano_fingers.jpgI have waited 6 full months to be able to say this, and the day has finally arrived. So here it is: I know without a shadow of a doubt that Ampligen works. As I finish my 24th week of Ampligen, I can say with confidence that this amazing drug has performed “as advertised,” and then some.

I know this not only because of the numerous physical and mental tests I take at the clinic that tracks my progress and improvement, but most importantly for me, I know Ampligen is working because of my own, secret test.… Read More

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Posted by Cort Johnson

PANDORA has been engaged in a month long contest on Facebook by Chase Community Giving. The top 200 charities will win $20,000 – an enormous amount of money for a CFS non-profit. As of 3 days ago PANDORA was at a solid 104th place. Now, with 21 hours to go, because of a last minute rush by other groups, PANDORA has sunk to 165th place. At this rate they will lose the contest on the last day and no CFS groups will take share in the winnings.

PANDORA has big plans – including a Neuroendocrineimmune Treatment Center – that can benefit us all.… Read More

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3178-christinaGombar.jpgThis article by Rebecca Hastings is from Society for Human Resource Management. It contain pertinent issues for people with ME/CFS including the hurdles to finding meaningful employment while on disability. Just because one is on disability does that mean one should not be allowed to work at all? That is one of the issues that Christina Gombar, a person with ME/CFS and a Forum member talks about in this article.

Many of our fellow citizens with disabilities are unemployed … they want to work, and they can work,” said President George H.W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990.Read More

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PANDORA WINS!

July 9, 2010

Posted by Cort Johnson

Written by Lynn

PANDORA Not only hangs in there to win but actually rises in the rankings as people with CFS pour the votes on in the last day! Congratulations PANDORA and congratulations to all of us for coming together. Next year all the CFS groups band together (Phoenix Rising will be a non-profit) and we get more deserving groups in the top twenty. (Cort)

Pandora has over the last day dropped to 186th. This is the last 5 hours. Only +/- 20 votes in front of the last position. It is now time for everyone with CFS to vote.
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Posted by Cort Johnson

Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the Alter paper. She reports that the primary investigator at the FDA was Shyh-Ching Lo and that the paper was near enough to publication for a galley proof to have been sent to the editor’s office.

Interestingly the Alter paper was not a surprise to the CDC at all; three months ago they had briefed the CDC extensively about the study and it’s outcome.… Read More

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Posted by Cort Johnson

After a turbulent couple of weeks in which both the negative CDC paper and positive Alter paper were reportedly about to be published and then, at the behest of public health officials at the DHHS, both were withdrawn, the CDC paper was published in the Journal Retrovirology. As was rumored it was negative on all counts – no XMRV was found. Perhaps not surprisingly it was quickly engulfed in controversy.

Participants - The lead author, WM Switzer, has 70 citations in PubMed – many of which are on HTLV. Oliver Hohn -associated with the Robert Koch Institute in Germany – was a member of the German team that recently found XMRV in the respiratory tract of immune compromised patients.… Read More

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Written by usedtobeperkytina

I just wanted to give my review of the PR with the latest events.

First we had the rumor of a pulled press release from CDC. Seems what was pulled was the study. If there was a press release with it, it was not just temporarily pulled but permanently pulled. So, this rumor was close if not accurate. Kurt, you get a “B” as far as information. You even came back and said your sources were still telling you they were on hold, when others were saying they were approved. You got you some good sources.… Read More

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Read the Fine Print

July 4, 2010

Posted by Cort Johnson

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Written by Kelvin Lord

fine+print+lady.jpgWith my nose completely shut due to allergies, out of desperation the other day I took an OTC antihistamine. It was Italian day at lunch and I had grown weary of not tasting any of my food, so ignoring the instruction panel I ripped open the package where the headline read “Daytime Safe Formula” and took the tiny white tablet without even a glance at the label. Big mistake.

Exactly twenty minutes later, with my eyelids heavier than concrete and ravioli dripping from my chin, I lifted my weary, sleepy head out of my plate, and with all the effort I could muster, focused a magnifying glass on the small print on the side of the box and read to my dismay: “Warning: May cause drowsiness.”

“Whaaat?” I said to myself, “this is supposed to be ‘Daytime Safe’!… Read More

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Posted by Cort Johnson

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3024-XMRVWPI.jpgAfter a turbulent couple of weeks in which both the negative CDC paper and positive Alter paper were reportedly about to be published and then, at the behest of public health officials at the DHHS, both were withdrawn, the CDC paper was published in the Journal Retrovirology. As was rumored it was negative on all counts – no XMRV was found. Perhaps not surprisingly it was quickly engulfed in controversy.

Participants
– The lead author, WM Switzer, has 70 citations in PubMed – many of which are on HTLV. Oliver Hohn -associated with the Robert Koch Institute in Germany – was a member of the German team that recently found XMRV in the respiratory tract of immune compromised patients.… Read More

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