AAFP’s CFS Information Sheet: Smack in the Face for Patients
Re: Toni Bernhard’s blog, “Another Blow to Chronic Fatigue Syndrome Sufferers”
Following are a few reader reactions to the American Academy of Family Physicians’ description of CFS as “a disorder that causes you to be very tired.” (Apparently failing to note that the FDA pronounced ME/CFS a “serious and life threatening disease” in September.)
• What’s in a name. I’ve always thought that the best reply to nonsense like this spewed out by the AAFP was: “Calling ME Chronic Fatigue Syndrome is like calling diabetes Chronic Thirst Syndrome.” Covers about the same territory. – W
• Yep, that is an insult for sure… The CFS name in North America was a means to discredit the symptoms & allow the insurance companies to deny its physiological basis vs. the psychobabble model we now use…. How many more people have to lose their lives from these diseases or by their own hands before the medical community wakes up? – A
• Let’s hope change comes soon. Yes, people are dying from this illness. I hope with all my heart that the medical community changes its thinking on it… and soon. All my best – Toni
Video of Dr. Byron Hyde’s Oct 27 Presentation
On Oct 27, the Massachusetts CFIDS/ME & FM Association (www.masscfids.org) hosted a presentation of fresh insights on ME/CFS research past and present by Byron Hyde, MD – Founder and Director of the Nightingale Research Foundation in Ottawa, Canada. Click here to view the three-part video coverage of his presentation: 1) General and CFS, 2) Fibromyalgia, and 3) Questions.
As Dr. Hyde explains, “One of the biggest issues for patients is getting a physician to RUN tests, then KNOW what the results mean, and finally what to try for TREATMENT.” A written summary of his talk will be posted soon.
Could Chronic Bartonella Explain Some ME/CFS?
This Scientific American brief by Marissa Fessenden notes an emerging suspicion that the little-understood Bartonella bacterium may also be connected to many cases diagnosed as Lyme (in 46.6% of those diagnosed before referral for testing), arthritis (20.6%), CFS (19.6%), and fibromyalgia (6.1%). She’s citing an article published in the May 2012 issue of Emerging Infectious Diseases which also notes Bartonella‘s strategies for eluding detection in the body.
Don’t Let ME/CFS Be Mislabeled a ‘Mental Disorder’!
In this “Turning Straw Into Gold” blog post, Toni Bernhard urges us all to help protest a section of the soon-to-be-published Diagnostic and Statistical Manual of Mental Disorders (DSM-5) which encourages healthcare providers to define ‘unexplained’ illnesses as mental disorders. Read the criteria they use for a “Somatic Symptom Disorder,” and it’s hard to see how anyone with ME/CFS would escape. By “liking” their blogs and commenting in overwhelming numbers, we can help Toni and fellow Psychology Today blogger Dr. Allen Frances send the message that this will not stand.
Dr. Chia Video on Viral Involvement in ME/CFS
Re: “ME/CFS Alert #38: Dr. Chia on His Son’s ME/CFS & Remission”
Dr. Chia explains his belief that viruses – especially certain enterovirus ‘cousins’ of polio viruses – are cell-invading seeds of unexplained illness.
Two Childhood Symptoms Often Predict IBS
Two GI symptoms in childhood are often unrecognized early manifestations of adult IBS, according to this recent controlled study. The researchers found IBS patients recalled frequent diarrhea (at 7 times the rate for healthy controls) and abdominal pain (at more than 4.3 times normal). No association was found for other childhood symptoms including colic, constipation, and migraine.
Kenny De Meirleir to Present at WPI
Kenny De Meirleir, MD, PhD, a world-famous, Belgium-based ME/CFS clinical researcher, will speak in Reno at the University of Nevada’s CMM/WPI Auditorium on Monday, January 28. We can find no details on the topic or specific time yet, but Whittemore-Peterson Institute suggests it will provide more soon on its Facebook page.
Test for Lyme Treatment Effectiveness
Re: “The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment.”
This full-text article in the Open Neurology Journal suggests use of the LTT performed about four weeks after antibiotic therapy for Borrelia infection can be a useful way to follow up on the therapy’s effectiveness.
Patient Conference Call on ‘Redefining Exercise in CFS’, Jan 14
On Monday, Jan 14, the CDC will host a conference call for ME/CFS patients from 3:00 to 4:00 pm Eastern time. The topic of the meeting will be “Redefining Exercise in CFS Through Redefining Aerobic Activity,” and the presenters will be two experts from the Ft. Lauderdale-based Institute for Neuro-Immune Medicine – Director Nancy Klimas, MD, and clinical exercise physiologist Connie Sol, PhDc. For details, and to submit questions for Klimas and Sol to answer, e-mail CFSPCOCACall@cdc.gov.
One More Ampligen Trial Needed, Or Can Patient Petition Help?
On Dec 20, an FDA Advisory Committee voted 9-4 not to recommend Ampligen as a candidate for commercial approval at this time, and suggesting another study is needed. Ability to improve on Ampligen is indeed unpredictable, but many people lacking other options are desperate for the opportunity to chance it.
Accordingly, a petition to the FDA, posted on iPetitions.com (http://www.ipetitions.com/petition/ampligen/#sign_petition), allows people with Chronic Fatigue Syndrome/ME to register their desire to have an opportunity to try Ampligen therapy if they wish. Will the ME/CFS community and its advocates muster the target 2,000 signatures or more? The FDA will render a decision on whether to conditionally approve Ampligen for ME/CFS on Feb 2.
CFS/ME & Gulf War Illness Patient Conference, Jan 26 in Miami
More than a dozen experts will speak about CFS/ME and Gulf War Illness research & treatment on Jan 26 at a patient conference sponsored by Nova Southeastern University’s Institute for Neuro Immune Medicine in Ft. Lauderdale. Experts include Dan Peterson, MD; Gordon Broderick, PhD; Mady Hornig, MD; Connie Sol, MS; Irma Rey, MD; Sue Levine, MD; Nancy Klimas, MD; Dolores Perdomo, PhD; Lynn Rafferty, PharmD; Scott Carlson (Exec. Dir. Chronic Fatigue Initiative); and Rebecca Halstead (Army Brigadier General, retired). For more information and to register (minimum donation $25), click here.