by Joel (Snowathlete)
For millennia man has predicted the end of the world: an asteroid strike, a super-volcano, global warming… but in recent years, we’ve been told that our greatest threat is the microbe. In 2003 it was Bird flu, then in 2009 it was Swine flu, but as we’re still here, perhaps it’s a cock-and-bull story, rather than a bird and pig one?
Either way, we’ve got bigger fish to fry regarding our own disease, but all this talk of animals may not be far from the truth when it comes to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Zoonoses (Greek: “zoon” = animal, “nosos” = disease) are diseases that are transmitted to humans from other animals, and such diseases are caused by a variety of pathogen types including parasites, bacteria, fungi, and viruses.… Read More
by Jody Smith
Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so.
Many years later it rolls off the tongue, though not in a pleasant way. Each syllable brings home a sense of irony that a term that is too hard to remember and to say should be such a central facet of ME/CFS.
You might have symptoms I don’t have. I may respond well to treatments that have no positive effect on you.… Read More
The FDA: about to get a ‘smart, strong push’
Late on Friday, 8 February, Bob Miller announced the end of his hunger strike to get Ampligen approved for people with ME/CFS.
Our community had never seen anything like this and I hope we never have to again. It hasn’t been easy watching Bob get weaker and weaker on his video diary and I’m sure there’s a collective sigh of relief going around the world as people hear the news.
Bob made the announcement on his Facebook page and asked us to now stop sending mass emails to the federal agencies and turn our efforts towards contributing to the FDA Stakeholders Meeting:
We, as a community, accomplished some very important things during the last few weeks, and so I am ending my hunger strike tonight.… Read More
In the first of a series of articles by Phoenix Rising writers on the Institute for Neuro Immune Medicine’s Patient Conference at Nova Southeastern University, Vonnie Kennedy gives an overview of the morning session.
I was lucky enough to attend the morning session of the 2013 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Gulf War Illness (ME/CFS and GWI) Patient Conference at NSU on Saturday, January 26.
The conference was a celebration of the February 12 opening of the Nova Southeastern University (NSU) College of Osteopathic Medicine’s (COM) Institute for Neuro Immune Medicine (INIM).
INIM’s Big Plan: Finding Effective Therapy for ME/CFS and GWI
Nancy Klimas, M.D.… Read More
National Institutes of Health
The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial of Ampligen.
There are several things that Bob has asked us to do to put pressure on the NIH. Please do them now. I hope we never have to see one of our number on hunger strike again: let’s act fast and not let Bob’s efforts be wasted.… Read More
Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump!
The federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) meets twice a year in live webcast events
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of the US Department of Health and Human Services (HHS) on a broad range of issues and topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Issues covered by CFSAC can include factors affecting access and care for persons with ME/CFS; the science and definition of ME/CFS; and public health, clinical, research, and educational issues related to ME/CFS.… Read More
Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same.
Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to add pressure to approve Ampligen as a therapy for ME/CFS.
The FDA is expected to announced its decision sometime around Sunday 2nd February – this Sunday – so there’s no time to lose.
Wherever you are in the world, please use Bob’s template to email, and do it right now.… Read More
by Jody Smith
Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time.
It doesn’t really work that way.
Some of us can’t sleep at all. Others sleep for long periods but never when they’d like to. Many of us lie helplessly awake all night longing for respite, only able to succumb to sleep as the dawn begins to break.
My own experience for a number of years was a reversal of the usual sleep-wake cycle. I rarely saw my family since I slept most of the daytime hours, only feeling a semblance of wakefulness after sunset.… Read More
Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir’s clinic in Belgium…
Prof Dr Kenny De Meirleir
I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service. The UK is about as backwards as it gets when it comes to this illness of ours, so I was prescribed Graded Exercise Therapy (GET) by the NHS. It took me a long time to recover from the damage GET did to me, but once I was well enough, I started looking for better doctors and better treatments.… Read More
by Karen Luoto
I still cannot believe it…
Jen, Karen and Adin sharing a moment of “true friendship”.
I NEED to tell you about a cross country trip I recently took with the emotional and logistic help of other ME/CFS’ers from the community.
Although I am in severe pain now, feeling as though every bone in my body is breaking with every step, the tendons and ligaments have all torn away from every joint, the brain is detached completely and my eyes cannot seem to focus on a single word at the same time, I AM HAPPY!
I recently traveled a 4400+ mile trip from Jacksonville, FL to San Antonio, TX to Albuquerque, NM back to San Antonio and then back to Jacksonville.… Read More
by Simon McGrath
A new study, from Julia Newton’s group in Newcastle, UK, has found evidence that reduced blood flow to the brain is associated with muscle abnormalities in CFS patients.
Earlier work by the same group had found that with many CFS patients, muscles don’t regulate acid levels properly after exercise. Another study, by Ben Natelson, had shown reduced blood flow to the brain of most in a sample of CFS patients. This new study looked at both muscle acidity regulation and blood flow to the brain in the same people with CFS. They found a strong correlation between the two, both at rest and in response to a challenge.… Read More
by Jody Smith
Llewellyn King has been gaining quite a reputation for himself in ME/CFS circles of late. He has been a journalist, foreign correspondent, editor, creator of his own publishing group, and public speaker over his long career. And now King is an advocate for people with ME/CFS. He writes about us often on his White House Chronicle blog.
King is also co-host of MECFSAlert, a YouTube program that he said was “developed to comfort the sick, to stimulate doctors to learn more about it and their patients, and to get the government to take it seriously, and spend more money and to have more passion for research.”
If any of us was Bill Gates, we wouldn’t ask ourselves whether we should donate money to ME charities. We’d just do it. We’d reach into our gigantic bank account and drop our billions on the problem, secure in the knowledge that we were pouring such shedloads – no, planetloads – of cash onto it that the problem would be solved.
We’re not Bill Gates. So, should we bother giving if we can’t give billions?
In his book, ‘How to Change the World’, John-Paul Flintoff says that we tend to think that when big things happen, it’s because one person did something big, but in reality, it’s usually lots of individuals making small contributions.… Read More
by Jody Smith
Nova Southeastern University College of Osteopathic Medicine is hosting a Patient Conference for Dr. Nancy Klimas on January 26, 2013. Klimas is considered to be an expert in immune disorders and one of the world’s best researchers and clinicians for ME/CFS.
The theme of the conference is CFS/ME and Gulf War Illness 2013 – A Celebration of Hope and Progress. The doors of the conference are open to all who are interested in hearing what Klimas has to say.
Dean Anthony Silvagni DO, PharmD will be welcoming the Institute for Neuro Immune Medicine to the NSU family.… Read More
The FDA will announce its final decision on Ampligen some time around 2 February but could make the decision much earlier.
“There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.”
So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS.
But it’s not too late. The FDA will announce its final decision on Ampligen some time around 2 February but could make the decision much earlier.… Read More
by Elaine Stammers
As a new year begins, I sit in my house looking out at the falling rain and think about Gillian McCarthy sitting in her unheated and leaking hut, many miles away from me in Somerset, UK. She awaits the return of the group of people who, by starting to build her a warm shelter for winter, have brought her hope. A hope that I know, from her letters and from conversations with her mother, was almost gone.
I may never meet Gillian as we both suffer from a chronic condition, though it’s more likely that I could get to her than she to me.… Read More
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
by Jody Smith
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
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
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
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…
Imagine 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
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
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
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
by Cort Johnson
“Other patients suffer a severe, long lasting illness, for which treatment is ineffectual, and even after the parasite has ﬁnally been eliminated, some sequelae persist, affecting quality of life and continuing to cause the patient discomfort or pain” (LJ Robertson et al, 2010)
Giardia is an interesting bug. Perhaps the most common intestinal parasite in developing areas, it’s not generally considered much of a threat in the developing world, but with a lowball figure of 20,000 cases the US in 2010 some researchers think of Giardia as a ‘re-emerging’ infectious disease.
Giardia, though, is not normally considered a serious infection.… Read More
by Jody Smith
A year ago, on Nov. 15, 2011, the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872) was introduced in Congress. On the one-year anniversary of the introduction of the bill, a press conference was held to build on the continuing support to make changes to the U.S. tax code. Since its introduction last year in the 112th Congress, the bill has gained support from 234 House Members and 40 Senate Members.
If passed, the ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986, so that tax-free savings accounts would be available for disabled individuals.… Read More
I saw 10 pence on the pavement yesterday. It was lying in some mud so I didn’t pick it up. I wish I had now: I’d forgotten it was really worth four quid.
How come? Because if the Simmaron Research Foundation can get $225,000 for a pilot study, it will bag them a guaranteed $800,000 from an Australian charitable foundation for the large-scale follow-up. Simmaron call this multiplying your donation by five. However, they’ve already raised most of the money for the pilot and only need $20,000 more, so at this point, every dollar you give is worth forty!… Read More
by Cort Johnson
Before XMRV was Kogelnik/Montoya…the 2006 unblinded Kogelnik/Montoya study, finding that 6 months of Valcyte use returned 75% of participants to full health, hit the community like a lightning bolt. Yes, the study was very small (12 people) and it was unblinded, but the stories of recovery were so dramatic that it was hard to imagine they hadn’t hit gold. All that was left, it seemed, was to document the progress with a more rigorous, placebo-controlled study that appeared to be under way.
“These preliminary clinical and laboratory observations merit additional studies to establish whether this clinical response is mediated by an antiviral effect of the drug, indirectly via immunomodulation or by placebo effect.” (Kogelnik et al, 2006)
Six years later that study has still not shown up.… Read More
by Jody Smith
The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.
There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.… Read More
This Sunday November 18th, members of the ME/CFS, Lyme and MCS communities are invited to join together in a teleconference to say “Thank you; We love you; Goodbye” to Rich Van Konynenburg.
All are invited to the
ME/CFS, Lyme and MCS community’s
Rich Van Konynenburg
November 18, 2012
On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying “Thank you; We love you; Goodbye,” to our beloved community leader, Rich Van Konynenburg.
We will be joined by Rich’s wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr.… Read More