December 2012

The Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the organization which he established. The Phoenix Rising board wishes to thank Cort Johnson, as the founder of Phoenix Rising, for his hard work and tireless advocacy for ME/CFS patients, and we wish him all the best in his future projects.

Until Cort notified us on December 24th of his plans to launch a new website, we were under the impression that Cort would be continuing to post articles for Phoenix Rising according to the arrangements we had agreed with him in recent months.… Read More

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by Jody Smithcandles in the dark at Christmas time

Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread.

Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing stirs if this is coupled with the realization that we are not in a place where those earlier times can be repeated. And dread strikes the failing heart if Christmas as we knew it will not be happening again this year, and possibly will never be the same again.… Read More

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Try to leave your calendar open from 8am-5pm EST on the 20th for the FDA’s hearing in Ampligen!

Information about the meeting is available at December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee (not mistitled!).

The webcast will take place at https://collaboration.fda.gov/aac122012/ and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously watch and comment.

We’d appreciate it if pre-meeting discussion can be kept to the forum thread from this post, just to make life easier for the moderators (and to keep from having to merge a zillion discussion threads)

We’ll make another post the day of the meeting for discussion about the meeting as occurs…so take some time on the 20th to join in the discussion here/in the forums or in chat!… Read More

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by Cort Johnson

The benzodiazepines may be the most commonly used class of drugs in chronic fatigue syndrome and it’s easy to see why. Their ability to enhance the effects of the ‘feel good’ neurotransmitter, GABA, makes them a nice foil for study findings indicating that the fight or flight response is turned on in ME/CFS. Look down the list of effects (sedating, sleep-inducing, anti-anxiety, anticonvulsant, muscle-relaxing) and you can see why they seem a good fit for a disorder in which Dr. Cheney once said, probably only half–jokingly, that inducing a coma might be very helpful.

Benzodiazepines can have their dark side, however.… Read More

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by Jody Smith

elephant in the room

We’ve all known people we’d prefer to avoid. People who make us want to run the other way when we see them coming, because they do nothing but complain. It galls me no end that there are people who react this way to me if I talk about what life with ME/CFS has done to me.

Llewellyn King’s White House Chronicle blog helps to alleviate a bit of this for me. He writes about us with some understanding and concern about the devastation we deal with. King seems to sympathize with the secondary affliction we are faced with as well — the stigma of being seen by healthy people as lazy, lying or stupid.… Read More

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Sasha asks you (and your friends and family) to VOTE EVERY DAY until Wednesday – this could prove to be a crucial weekend in the Aviva voting contest…

10 days, 10 votes, 10 clicks - $150kImagine how long you’d have to stand out on a winter street, rattling a bucket at strangers, until you raised $150,000 for ME, Fibromyalgia and Lyme research. At a generous $50 a day, it would take you more than 8 years.

How fortunate, then, that the same $150,000 is up for grabs in Aviva’s online charity voting competition. All you have to do is click on a website button every day until Wednesday, 12 December.… Read More

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Man with placard

by Cort Johnson

Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing

URGENT: ME/CFS Patient “A C T I O N”

A Call To Impact Our (me/cfs) Nation

For All ME/CFS Patients, Families and Friends (U.S. & Non U.S.)


Organizer: Robert Miller, Cort Johnson and TEAM

Contact: 511bobmiller42@gmail.com

For the first time, people with chronic fatigue syndrome have the opportunity to make a difference in getting a drug approved for their disorder. At a public hearing on Dec. 20th an FDA advisory committee will advise whether Ampligen should become the first approved drug for chronic fatigue syndrome.… Read More

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by Kati and the Phoenix Rising Team

The Vancouver Chronic Diseases Clinic is set to open within the next few months. What better way to support this worthwhile project than to help it win some serious money from a charitable voting contest? With your help and support, we’re getting organized to do just that! Although the Aviva Community Fund is a Canadian contest for Canadian projects, people from all over the world are eligible to vote. This is where your help is needed! Details on how you can help can be found further down the page, but first, some background information on the project…

A Patient Initiative

A few months ago someone pointed this voting contest out to me, but I had a hard time trying to find a project that would be both helpful for patients while also meeting the entry criteria.… Read More

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