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From Our Readers – Comments & Suggestions – 09-08-10

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Top NIH Officials Met Sep 7 with ME/CFS Patients & Dr Peterson

[This just in.] Kept confidential until it happened shortly before the 1st International XMRV Conference kicked off at NIH Headquarters in Bethesda, Maryland, a small group of ME/CFS patients, their families, and Dr. Danial Peterson met with NIH influentials to discuss the need for trust building, adequate funding for research, 'invisible illness' centers of excellence, and a treatment trials process. To read a summary of the meeting by two long-time patients who participated, including their own testimony, see "Report on the September 7 Meeting of NIH Officials with ME/CFS patients, Families, and Dr. Dan Peterson." – Ed


Saturday, Sep 25 – Free Nationwide Rx Drug ‘Take-Back’ Day

The Drug Enforcement Administration (DEA) and government, community, public health and law enforcement partners have announced a nationwide prescription drug “Take-Back” initiative to help avoid improper disposal and other problems with un-used medications.

DEA will be collecting potentially dangerous expired, unused, and unwanted prescription drugs for destruction at sites nationwide on Saturday, September 25th from 10 a.m. to 2 p.m. local time. The service is free and anonymous, no questions asked. Each community will have designated pickup sites that will be posted at http://www.justice.gov/dea/pubs/pressrel/pr081910.html – T


Dr. Lapp ME/CFS Droxidopa Trial Follows Lead of Trials for FM & ADHD

Dr. Charles Lapp, director of the Hunter-Hopkins Center in Charlotte, North Carolina, is conducting a single center open label phase II trial to assess effects of the drug Droxidopa in a subset of ME/CFS patients. (Open label means the patients will know what they are taking and there is no placebo control group.)

According to the trial description at ClinicalTrials.gov:

“A subset of patients suffering from chronic fatigue syndrome exhibit symptoms of neurally mediated hypotension [autonomic dysregulation where the blood pressure falls after rising to an upright position, with associated light headedness]. While the underlying pathophysiology of chronic fatigue syndrome is not precisely understood, a dysfunction of the autonomic nervous system is thought to play a role in this subset of patients. In several small studies, subjects within this subset have noted improvement in their chronic fatigue symptoms when treated for their neurally mediated hypotension.”

Droxidopa is a synthetic precursor of the neurotransmitter norepinephrine. It is currently in Phase III clinical trials for treatment of neurally mediated hypotension (and is already being studied for treatment of fibromyalgia and adult attention deficit disorder in two ongoing phase II trials).

To read more about the ME/CFS study at Hunter Hopkins and to find contact information, go to http://www.clinicaltrials.gov/ct2/show/NCT00977171


Win up to $1K with Your Neurologic Disorder Awareness Video

“Win up to $1,000 and Attend the 2011 Neuro Film Festival in Hawaii.“ People who have loved ones affected by a brain disorder or have been affected by a disorder themselves are encouraged to share their story by submitting a short video (up to 5 minutes) to the 2011 Neuro Film Festival competition at http://patients.aan.com/go/about/neurofilmfestival. The deadline is Feb 15, 2011. – R


Beware of Retrovirus 'Cures' Being Sold

Now that XMRV is out there, of course we are going to be inundated with "cures" and sites that claim to have the answers for us.

Please be discerning and skeptical of these sites! If they know anything at all, they should know that clinical trials must be done in actual patients (not you paying to be a guinea pig), done scientifically and with disclosures to the patients as to the possible bad effects of treatments.

Please do not feel desperate enough to try anything being sold to you by unknown people, clinicians, or sites that don't have referenced links with good research behind them. The Internet is not a great place to have your care, and I doubt your doctor will support that type of care with follow-up testing to make sure you're not being damaged in some way! Buyer Beware. – S


News of ME/CFS Virus Research Pioneer Dr. DeFreitas

I know someone who has talked with DeFreitas since the discovery of XMRV. She is still very much alive, and she is disabled. She says she feels "bittersweet" about the discovery of XMRV and that she does not want to say anything in public.

I was around back in 1991-1992 when DeFreitas and her work were crucified by the CDC, with the help of the CFIDS Assn of America, and it saddens me very much. The destruction of DeFreitas' career was not only horrible for her personally, it destroyed interest among researchers in working with anything to do with ME/CFS at all, and set us, as patients, back years and years.

Now it looks like the CDC is trying to do the same thing with WPI's research on XMRV. If you have not yet done so, please read Patient Advocate's eloquent blog entry: “The Flashpoint and the Big Freeze.” … – P (a member of www.mecfsforums.com)


Sep 13-19, 2010 is National Invisible Illness Awareness Week

This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved (see http://invisibleillnessweek.com), including a virtual conference September 13-17 online for free with speakers each morning from 10:30 to 12 noon USA Pacific time.

There is a Meme “30 Things You May Not Know About My Invisible Illness”; you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page e-book when you sign up for email updates, with 263 tips!

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. You can find more information at http://invisibleillnessweek.com

Thank you so much for passing this along! – Lisa


Lunching Around the London Loop for UK FM Awareness Week (Aug 28-Sep 11)

Pam Stewart (chair of Fibromyalgia Association UK) has been walking one segment every day in the 150 miles of connecting pathways around London (the London Loop). There’s an article and online itinerary at the FMA UK website, with a lunchtime FM meeting place mapped out for each day. All are invited to join in. The hope is to increase the number of FM support groups & participants in London. (Now there are only two groups for the whole city.) – H


Legal Action Over Aussie Lyme Case

I found this on the excellent ME/CFS Australia (SA) website (http://sacfs.asn.au), which reports on fibromyalgia, ME/CFS, and MCS news everywhere in the world. [It begins, "A Sydney woman will launch a class action against New South Wales health authorities after autopsy results showed her husband was riddled with a disease the Health Department says does not exist in Australia." Read the rest HERE.]


St John's Wort Cuts Benefit of Opioid Pain Drug Oxycodone

Re: "St John's wort greatly reduces the concentrations of oral oxycodone"

Who would have suspected this? I had been thinking about trying St John's wort in place of my antidepressant, but I do take oxycodone so that wouldn't be good! I'm going to share this with my doctor, because I'd be surprised if he found out on his own. – F


The UK Ban on ME/CFS Blood Donation

Re: "Uk bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces"

Why wait until November to implement the ban, if they are that concerned about our health (and the safety of the blood supply). It's a simple matter to ask the question when screening their blood donors. It's the right policy (I gave up blood donation years ago because I instinctively knew it was the right thing), but the wrong timing. – S


Suggest Daily Fibromyalgia Cause/Cure Prayer or Meditation Minute

I would like to organize a one-minute prayer everyday to ask God for the cause(s) and cure(s) for our illnesses. Here is what inspired me:

"Someone has said if we really understood the full extent of the power we have available through prayer, we might be speechless. Did you know that during WWII there was an advisor to Churchill who organized a group of people who dropped what they were doing every day at a prescribed hour for one minute to collectively pray for the safety of England, its people and peace?"

If you would like to participate: Every evening at 9:00 PM Eastern Time (8:00 PM Central) (7:00 PM Mountain) (6:00 PM Pacific) etc., stop whatever you are doing and spend one minute praying [or if you prefer, meditating]…. – E


It Took Years to Figure Out – Salt Triggers My Fibro

I didn't realize what was making my body ache all over. Started removing things, and it ended up being the salt. I had been eating a game hen that they put in a salt brine for a long time. Then last night, forgot the reaction I was getting from it. And the achies were killers. For me, the salt bloats me, pushing on my muscles making them tight = FIBRO!

So today, I'm crashed again. Just glad I got a good reminder. Taken years to figure all of these triggers out; whatta life! – C


Finding Best Medical Insurance in Line With New US Law

This tool below will help you find the health insurance best suited to your needs, whether it's private insurance for individuals, families, and small businesses, or public programs that may work for you. It was created to help consumers under the health insurance reform law, the Affordable Care Act. (See http://finder.healthcare.gov) – T


Acupuncture & Interstitial Cystitis/Bladder Pain Videos

In these videos anesthesiologist/acupuncturist Dr. Anna Kelly, MD, explains acupuncture and how it can be used to help interstitital cystitis or 'painful bladder' (www.youtube.com/watch?v=glzBtgEeUls), then demonstrates it in a patient (www.youtube.com/watch?v=eibIhRrOKVU). Amazingly, she puts the little needles in the patient's foot, and the needle insertion looks instantaneous & painless; not the way I envisioned it. – O


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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