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From Our Readers - Comments & Suggestions 07-06-11

  [ 11 votes ]   [ 1 Comment ] • July 6, 2011

How Could Infrared Sauna Benefit Someone with MCS?

Re: "Ask the Canary: Is Sauna a good therapy for Multiple Chemical Sensitivity?" 

This post by advisor Susie Collins cites Dr. Pall's research to explain why "[Infrared] sauna therapy can help some people with Multiple Chemical Sensitivity, though not in the way most people think." - D


Better Pain Care Will Start with MD Attitude Adjustment

Re: The IOM Pain Research Committee's report  Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research..

To cut through the 350 pages of text, the Committee (which invited testimonials from many pain patients) observed that ignorance has crippled US progress in the science and provision of pain management. Medical schools devote too little time to education about long-term pain (typically 10 hours in a 4-year medical program) and the unafflicted public, also uneducated about the reality of chronic pain, tends to write off patients as drug-seekers and work-shirking whiners.

Meanwhile, the report says one-third of the US population is affected by chronic pain, and its costs easily top $560 billion a year not counting military and other major pain-related costs.

The "Blueprint" hopes to improve pain management starting with the implied need for education. The committee, at least, got the patients' message. Thanks to all who testified. - L


Patient's Letter to 'Worst Doctors

This blog ["An open letter to my worst doctors," from a link on the Hunter Hopkins Center Facebook] speaks for many ME/CFS, FM, & Thyroid patients who have had to learn unpleasant lessons from uninformed but condescending docs. Has a lot to teach.- U


Vote in Australia's Answer to Chase Giving & Vivint?

I know this may at first seem an unusual request, but here in Australia there is an organisation called GETUP which runs campaigns on behalf of needy causes, against injustice pressuring governments and decisionmakers, with amazing success.

They seem to raise vast amounts to finance the campaigns from public donations, and at present there is a suggestion on their plans for the future that they do a campaign on our behalf for Biomedical Research into M.E./CFS. Whilst this directly affects Australians, it indirectly affects all of us with this disease, for as soon as any real government Biomedical research is started somewhere in the world it is not only a beginning but also may initiate a trend.

The outcomes are unpredictable, but the value of the research data could be priceless, so please take a few minutes to go to the following link, make a comment, then go to the Health topics page listed on their homepage and give it the number of priority votes you think it deserves. The campaign with the most priority votes becomes the next funded.


- FNC ME/CFS Association


Extra Help for Medicare Prescription Drug Costs

Medicare prescription drug costs are a big impact on our income for many of us. Please don't allow pride to stop you from applying for extra help (See - “Apply online for Extra Help with prescription drug costs) if you qualify for help. If you're not sure if you fit the guidelines for help, definitely call the Extra Help number … and find out for sure. It really is tough times and we can use all the help we can get.  - T


Hyperbaric Oxygen Therapy Helping Her Fibro

Re: "Disordered Breathing in ME/CFS & Fibromyalgia – Symptoms and Recovery"

Because I knew my body was oxygen-deprived, I tried hyperbaric oxygen therapy. This is where you go into a large tube, and they pressurize the tube so that it feels like the same pressure as scuba diving. You breathe 95% oxygen while you're inside. I stay in there for an hour (but the time is variable depending upon your preference).

I didn't know what to expect from doing the therapy, but I found that my fibro was reduced by about 50% over a few weeks of Mon-Wed-Fri therapy. My feeling was that there was a lot of muscle/ligament/tendon damage (from not having enough oxygen for a long time), and that was aggravating the fibro.

When I gave my body all that oxygen, it could finally repair some of this stuff properly, and thus the fibro wasn't complicated by that. There is NO DANGER to doing hyperbaric therapy at the depths and times that I mentioned. The commentary you may find on the Internet is completely uneducated (I am a physicist as well, so I understand what I'm talking about). And I've been doing this therapy for 1.5 years (I'm down to once per week now) with only positive effects.

It's worth a try at least, since I've found long-term benefit from doing the therapy. - S

POTS as Potential Evidence of Chronic Lyme

Re: “Postural Orthostatic Tachycardia Syndrome following Lyme disease”

I have over 230 scientific references on the persistence of the Borrelia bacteria within the human body despite antibiotic treatment. Testing is inaccurate - so how do "they" really know the "treatment was successful"? Current treatment guidelines are faulty and not long enough to eradicate this most genius bacteria - this bacteria "hides" when threatened - has 3 forms - spirochetal, cell wall deficient, and cyst form. It is very likely that the "syndromes" being referred to here are actually signs of persistent infection. People have actually died following unsuccessful treatment that is based on the current treatment guidelines - died from numerous issues...including heart.

Time to wake up and realize that the guidelines are faulty - treatment based on these guidelines does not work for most people and damage is still being done by the bacteria after it comes out of "hiding". It lives in connective tissues, organs and can even drill into bone - is very hard to detect antibodies in blood because of this fact. AND the fact that there are hundreds of Borrelia species (which have a 25 chain DNA) and the current testing only looks for a few of these species...gee, don't even get me started on the co-infections one can aquire along with the Borrelia. - L

I have studied this extensively myself, and fully agree with the previous post. Borrelia spp (Lyme Disease pathogen) cannot be successfully eradicated from the human body with any known medical treatment, except for infections that are treated adequately with antibiotics in the first ~ 4 weeks of infection. Once the Lyme pathogen completes a life cycle (4 wks) and some of them go into cyst stage, the best that can be hoped for is remission, which is to say that the body's immune system becomes able to keep Borrelia at bay, after the population of this bacteria is knocked down by antibiotics, stress reduction, etc. – A

Further reading. Pamela Weintraub's book, Cure Unknown. Exhaustively researched and referenced. Splendidly written by a top-notch science journalist. The film documentary 'Under Our Skin' also. Dr. Joseph Burrascano's 2008 Treatment Guidelines.


Are Nurse Practitioners Best for FM Care?

With reference to the new IOM pain report pointing out that most doctors know little about chronic pain: one solution could be this Fibromyalgia Network article - "Nurse Practitioners Offer better Care" by Janis Leibold. She suggests that if you don't find a nearby Nurse Practitioner in your insurance list of providers, call around to a few primary care doctors to see if they have an NP working in their office. - J


Sjogren's-Like Symptoms & Aspartame Habit

I Googled Sjogren’s and aspartame [NutraSweet], and there are several hits connecting the two. Aspartame can cause the dry eyes and other symptoms associated with Sjogren's. Here's a couple of links:

• From The Townsend Letter for Doctors -

• From Southern Medical Journal -

- M


Cream Could Be Helping Arthritic Hands

I found this by accident. I use Gold Bond foot cream for my dry skin on my feet [I have Sjogren’s]. Since I've been using it, rubbing it in well with my hands, the arthritis in my hands is no longer painful and the swelling is down. I don't know which ingredient is working for the arthritis but I'm going to continue using it. It's great for dry skin too. - M


"ME/CFS Alert" TV Episode #2

The second segment of the new Web-based TV show - "ME/CFS Alert" narrated by host Llewellyn King - is now available on YouTube (

- ME/CFS Alert


Dr. Peterson Launches His Own Research Foundation

Dr. Daniel Peterson, MD, (the "Peterson" of Whittemore-Peterson Institute in Reno, NV) has officially founded a nonprofit research foundation of his own – Simmaron Research, Inc. ( – which is asking for donations to fund pilot studies in pursuit of diagnostic markers & treatments for “CFIDS/ME.” Seemingly not in collaboration with WPI research.

According to the Simmaron Research Inc. site:

• “The state of the science is on the verge of discovering diagnostic markers that can be translated into tests and treatments for CFIDS/ME.”

• Studies that the Incline Village, NV-based Foundation hopes to fund will benefit from “Dr. Peterson’s repository of more than 1,000 patient biological samples and records,” which he has collected over 25 years seeing patients.

• Contributions to Simmaron will be used to cover overhead and fund pilot studies which can then, if they produce promising results, attract added funding for continued study from government, university, and commercial sources.

• These pilot studies might be conducted with such researchers as Dr. Sonya Marshall, et al. at Bond University of Australia, and Dr. Konnie Knox at Wisconsin Vital Research.

- ProHealth


Note: This information has not been reviewed 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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Article Comments Post a Comment

Vivint Contest - Vote for National ME/FM Action Network
Posted by: cfs_info
Jul 6, 2011
Vivint - Please Vote for Your Pick of Nonprofits to Win $100,000 ProHealth note: We owe our votes in the vivint.givesback contest to a number of worthy organizations that serve us. Following is a request from one of those - the ME/FM Action Network. They're based in Canada but their reach is international. Please vote for the National ME/FM Action Network daily. They spearheaded the Working Case Clinical Definitions, Diagnostic & treatment Protocols for ME/CFS and FM Consensus Documents, known world-wide as the Canadian Definitions, and will be host to the IACFSME International Conference for ME and FM in Ottawa Sept 22-25. These efforts are invaluable to the scientific and research communities around the world. Vote daily for them at The first time you vote you'll be prompted to LIKE the Vivint Facebook site. For subsequent votes, you just need to LOGIN and then scroll down and click the VOTE button. If you want a daily reminder, please see event ( - National ME/FM Action Network (
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