March 2012

Posted by Cort Johnson

What's the story with Social Security Disability and ME/CFS? Take the survey and let's find out..

Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult.  Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what works best in the disability process.

We’re attempting to rectify some of those problems in this online survey of people with ME/CFS who have applied for Social Security Disability and/or Supplemental Income Security (SSI).… Read More

2 comments

Posted by Cort Johnson

RESEARCH

A Biological Cause of ‘Poor Stress Management’ Found in ME/CFS?

Brain Behav Immun. 2012 Mar 6. Stress management skills, neuroimmune processes and fatigue levels in persons with chronic fatigue syndrome. Lattie EG, Antoni MHFletcher MAPenedo FCzaja SLopez CPerdomo DSala ANair SFu SHKlimas N.

Its certainly not clear that everyone with ME/CFS reacts poorly to stress but anecdotal reports suggest that many people with ME/CFS are more vulnerable to stressors after the getting the disorder than they were before they had it.… Read More

11 comments

Posted by Cort Johnson

Discuss this article on the forums

Many researchers think the problems in the brain or central nervous system probably play a key role in ME/CFS. Some of the most interesting research in the past couple of years has focused on the brain and the Ottawa conference was no exception.

At the conference we saw research findings begin to focus on specific areas of the brain, a spinal fluid study suggesting a brain injury is leaking proteins into the spinal fluid, a nasal study demonstrating more whacky autonomic nervous system results and a paper suggesting that, for some patients, it may all be in the nose……

PRESENTATIONS

The Seat of Fatigue in the Brain Identified?Read More

Add Your Comment

Posted by Cort Johnson

The recent blog on Hemispherx’s Ampligen study has been amended to take account of the fact that the study involved an analysis of data from a 1998-2004 study. The blog in its original state suggested that this was a new study done in response to the FDA’s 2009 concerns. That was not true. Hemispherx may have done a re-analysis of old data in an attempt to comply with some of the FDA’s concerns but it did not, at least in this paper, embark on a new study with new patients. My apologies for any misconceptions.… Read More

Add Your Comment

Posted by Cort Johnson


Short-take: Hemispherx provides added proof of Ampligens efficacy in ME/CFS and allays safety fears but is it enough?

Hemispherx has published a major study on the effects of Ampligen (Rintatolimod) on CFS. Ampligen has been under the gun since the FDA’s refusal to approve the drug in 2009, pending more study.

A Big Blow – In what journalist (and Hemispherx critic) Adam Feuerstein called a ‘staggering blow’, in Dec. 2009, the FDA told Hemipherx that it could not approve Ampligen’s use in ME/CFS until the following issues have been settled. Hemispherx needed to:

  • Show credible evidence of Ampligen’s efficacy using expanded studies that are at least six months long
  • Show that Ampligen is safe; ie that it does not cause autoimmune disorders or heart problems (prolonged qt intervals)
  • Produce studies in which patients are on more than one dose regimen
  • Produce studies in which at least 300 patients are on doses intended for the market
  • Follow the FDA’s ‘recommendation’ that rodent studies be done to examine carcinogenicity
  • Provide additional data on quality control issues
  • Fix Inspection issues at one of Ampligen’s facilities

The FDA asked a lot for a small company when it asked for an expensive 300 person study and Hemipherx stock prices plunged 43% on the news.… Read More

22 comments

Posted by Cort Johnson

Many researchers think the problems in the brain or central nervous system probably play a key role in ME/CFS. Some of the most  interesting research in the past couple of years has focused on the brain and the Ottawa conference was no exception.

At the conference we saw research findings begin to focus on specific areas of the brain, a spinal fluid study suggesting a brain injury is leaking proteins into the spinal fluid, a nasal study demonstrating more whacky autonomic nervous system results and a paper suggest that for some patients, it may all be in the nose……

PRESENTATIONS

 The Seat of Fatigue in the Brain Identified?Read More

15 comments

Posted by Cort Johnson

Discuss this article on the forums

Written by Cort

The Phoenix Rising Forums are moving :Retro eek:….to a new Forum package called Xenforo.

The move did not come easy (particularly for me); VBulletin has been good to us but after taking a close look at both packages it became clear which way we should go…Xenforo is a new product (created by VBulletin’s former lead developer) that is cleaner both from a coding and presentation standpoint and more flexible and better adapted to what we want to create with Phoenix Rising….which is a fully integrated website/Forum package. We see Xenforo as an important bridge to the future for us and we’re excited about the move :Retro biggrin::Retro biggrin:

There will be some changes…some things that disappear and some new things that Xenforo offers – but the basis of the Forums (with blogs and groups) will be same.… Read More

Add Your Comment

Posted by Cort Johnson

RESEARCH GROUPS ON THE MARCH…..

CAA Spells Out Approach in Research Ist Webinar

I believe we are at the cusp of a revolution in how CFS is viewed, researched and treated. I don’t know it’s a year or 5 years but the future has never been brighter. Kim McCleary

With 471 people enrolled, participation in a core part of the CAA’s research effort, the Biobank has been good. Intriguing they’re not just enrollingt healthy controls and ME/CFS patients they’re also looking at family members (good for genetic studies) and people with other diseases. Given the high level of genetic risk suggested in the recent Albright study and similar levels in fibromyalgia studies, with a strong family component the CAA Biobank could end up being a center of genetic studies in ME/CFS.… Read More

13 comments

Posted by Cort Johnson

After looking at private/non-profit research efforts in 2012 we turn to what the  Feds (CDC, NIH, DOD) will be doing….

Centers for Disease Control 

Dr. Unger is head of the CDC's CFS research program

The CDC approach to ME/CFS under Dr. Unger is changing and for the better. Increased outreach and collaboration have become hallmarks of Dr. Unger’s CFS CDC program. 

Physician Education

Three Continuing Medical Education (CME) courses, three of which feature prominent ME/CFS physicians, are on tap for 2012. They include a

  • Clinical Diagnosis and Management course with Dr. Jones, Dr. Klimas and Bateman and others
  • A CFS and Sleep CME with Dr. Natelson, Dr.
  • Read More

4 comments

Posted by Cort Johnson

CFS recovery stories requestedAs part of a treatment overview Phoenix Rising is documenting what has worked for individuals who have gotten well or nearly well. While recovery is not common it does happen and we want to find out how.

If you’ve recovered or have mostly  recovered please give us your stories. If you know someone who’s recovered please let them know about this project (or give us their contact info and we will contact them.)

Neither your story or your contact information will be made public without your permission.  Basic information (see below) about your recovery will be entered into a spreadsheet which will be made public. … Read More

4 comments

Posted by Cort Johnson

The CFIDS Association of America (CAA) released a list $2 million dollars worth of new CAA funded studies  last week. There’s something of a ‘gestalt’ to a CAA study; the CAA likes to fund studies that gather enormous amounts of information and then use data mining techniques to ferret out new patterns, they like to ‘smush’ researchers in different fields together to paint a big picture of CFS, they’re very high on finding treatments and they want results quickly.

We’re still waiting on the results from some of the last package of grants.Read More

11 comments