From Our Readers – Comments & Suggestions – 09-22-10

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Our Unsung Heroes & Heroines – Research Study Participants

Long time ME/CFS patient advocate John Herd has a new blog site – the Herdisms blog ( One of his first posts is on our debt to those who volunteer for clinical trials. – J


How About Creating a 'Recovery Registry' for ME/CFS?

Re:"Looking to Interview Recovered ME/CFS patients” on the ME/CFS & FM Message Board

Some people are able to recover from CFS. A recovery registry should be created. This could be used to study people who were able to recover from CFS. – L

I am very dubious about reported recoveries. Glad that people feel and function better, but until we sort out what this illness entails it’s all only personally validating. The case definition and diagnosis is a mess. I know of people who have had a post viral fatigue been diagnosed with CFS, people with a diagnosis of fibromyalgia who fit the criteria for CFS, some people who had co-morbid depression diagnosed with CFS. People with Q-fever and Ross River fever diagnosed as having CFS. How do we know what any of these people have? Here in New Zealand our Department of Health records some people as having being diagnosed with ME and others who have been diagnosed with CFS.

So if we don't know what people actually have, how can we say what produces recovery? Every idea I have heard or tried for symptom relief. I have never heard of anything that would logically lead to a cure. Descriptions of the illness vary so much. I am not saying people cannot recover from ME/CFS but there is nothing in anything I have read to tell me they can/do, because I don't know if they had CFS in the first place.

I have had this for over 15 years. First thing I had to do was adapt to the illness and change my life around. This required considerable cognitive change. I gave up my profession, I gave up playing music, I modified my relationships I set small goals. I became more assertive with my medical advisors. I changed my diet, took painkillers, took supplements, avoided neurotoxic chemicals or wore a mask. Over the past 5 years I have systematically increased my fitness. I do function better than I did 15-10 years ago, and sometimes I think I am normal. I know if I went back into my profession, etc. I would fail miserably. So I have adapted downwards and feel normal within a new framework. Have I recovered? – I


This Saturday (Sep 25) is Free Nationwide 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 unused 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 has designated pickup sites that are posted at  – T


Dr. Myhill to Appear Again Before UK General Medical Council, Oct 7

Sanctioned by the General Medical Council in April for expressing such beliefs as that vitamin B-12 or magnesium may help some ME/CFS patients (a 'given' among leading clinicians in the US, for example), Dr. Sarah Myhill, MD, has been summoned to appear for a further hearing on October 7. For the occasion, she is asking advocates, and patients who feel they may have been harmed as a result of the GMC sanctions, to "tell your story, and my story" to the Press, and write or email letters to the GMC, kindly with a copy emailed to Hania at Dr. Myhill's practice as part of her defense databast ( Dr. Myhill asks those who have written to insist on relevant and acceptable answers from the GMC to the points they have raised. For details and a sample letter by Craig Robinson, click HERE and scroll down. – E


Editor Seeks Personal Stories for Undiagnosed Illness Anthology

Editor seeking submissions for proposed anthology: IN LIMBO: Medical Professionals, Patients & Their Loved Ones Share Strategies for Living With Undiagnosed Illnesses. Seeks well-written articles based on personal experience from those in the medical and counseling communities, from patients, and loved ones of patients. Editor: Cynthia Brackett-Vincent is co-editor of Contemporary American Women: Our Defining Passages (2009) and editor of the esteemed Aurorean poetry journal since 1995. Request Call for Submissions: – B


Fibromyalgia and Weight – Related?

I am wondering how many people with fibromyalgia are either overweight, like myself, or are normal weight, or even thin. The reason I am asking is because I do feel that some people, without saying so, think that my FMS would 'go away' were I slender. While I do feel extra weight may exacerbate FMS symptoms, I don't feel it either causes it, nor will weight loss cure FMS.

Dunno, but when a person is fat, some people think that it's open season on the overweight and that they have every right to advise you to lose weight, etc. I would never tell the hugely overweight people I see whilst waiting for the bus to lose weight. It's not my business, nor it it anyone else's business to tell me to do so. Honestly, some people need to learn that tactfulness is the order of the day… – S


Avoiding Friendly Fire in the Bedbug Wars

There’s an article in the MCS news website “Canary Report" ( on how high heat, and some nontoxic plant-based products containing peppermint, clove, and the like appear to kill or repel bedbugs. Otherwise the bloodsuckers are so hard to eradicate, with resistance even to DDT, that exterminators and horrified home owners are considering some VERY toxic pesticides. – O


Rivka's One-Woman Campaign for Research Funding in DC

Re: The video "Patient Mini-Demonstration Cells for End to ME/CFS Research Underfunding in Washington."

Go, Rivka! Absolutely commendable. How I wish I had been there beside her, supporting her. Thank you, Rivka, for doing for us what we wish we could do with you! Many blessings upon your work on behalf of us all. – S

Folks, Rivka's story inspired me to also write to Director Sebelius. Here is my letter. Feel free to copy/paste/edit and send along as well.

Dear Director Sebelius, I was inspired by the story I read about the one-woman demonstration of Rivka, who has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and has tested positive for XMRV, a gamma-retrovirus that has been found in 90% of ME/CFS patients and only 4% of healthy controls. I, too, have this disease, and I have had it for at least 17 years.

I am now retired from the military because I could no longer accomplish my duties. I also gave up being a swimmer and a triathlete because of this disease, and I am currently trying to complete college courses to learn a new skill, since I can no longer perform adequately in my former career field.

Not only do we have the XMRV research, but the NIH/FDA/Harvard just published a study that said that the more general family of retroviruses called Murine Leukemia Viruses (MLV), of which XMRV is a member, has been found in similar percentages of sick and healthy people. What is even more alarming is that the infected samples from the healthy controls came from people who had just donated blood!

According to the Centers for Disease Control there are 1 to 4 million Americans like me, all sick with ME/CFS, and this estimate does not include those that are infected with the virus but currently healthy. For 4 million people, that is 1.3% of the US population. And yet only 0.016% of the NIH’s $31 billion annual medical research money is spent on this illness. This is appalling and insulting! Director Sebelius, please dedicate more money to researching ME/CFS, the retrovirus XMRV, and the retrovirus family MLV. Dedicate more money to clinical trials so we can find treatments. And protect Americans from getting XMRV/MLV from blood transfusions, because this retrovirus is surely contaminating the nation's blood supply. We don't need another HIV/AIDS scenario. We need to act now. Thank you for your time – S

The problem is that the general perception of the public is, if someone is 'well' enough to travel and stand in front of somewhere protesting, the person can't be 'all that sick'. It's unfortunate but many have experienced in their own lives, where if we have a 'few good days' or a period of time of improvement, that folks assume we're now 'well'. – S


The Anti-inflammatory Food Pyramid

Saw a post on Dr. Lapp’s Hunter Hopkins facebook page with a link to Dr. Weil’s "Anti-inflammatory Food Pyramid" []. Most of this new pyramid seems like an improvement over filling up on refined & fortified carbs, but I wonder if Weil isn't a little behind on the science to suggest soy should be eaten 7 to 14 times a week while meals including proteins such as natural yogurt, lean poultry, or omega-3 eggs should be limited to 1 or 2 a week. Just for example, I read that unfermented soy has a “dark side,” including digestive problems for many people, while eggs have regained respect as an excellent anti-inflammatory food with a positive effect on blood cholesterol. – W


Blueberries Attack Insulin Resistance

David Mendosa's diabetes shareposts really stay up to date on the newest research. Since I love blueberries and was diagnosed with type 2 diabetes this year, I was thrilled to read his post ["Eating Blueberries with a Smile"] on a new clinical trial at LSU reporting the "bioactives" in blueberries can improve insulin sensitivity. – K


Cold & Flu Defense for Lyme or ME/CFS Patients?

Re: "Priming Your Immune System for Cold & Flu Season" by supplement reporter Karen Lee Richards

Q: (Addressed to Karen at HealthCentral, where she is patient expert on chronic pain.)  Regarding ProHealth’s article on products that improve the immune system to prevent infections. Is one better for Lyme disease/CFS? – D

A:  Actually, I wrote that article for ProHealth.  In doing the research for it, I was impressed by all of the scientific studies that were behind each of the products mentioned. While I think any of the products would be good, personally I would lean more toward… (To read Karen’s answer, click HERE.)


National HIV Vaccine Trial Now Recruiting

Re: "National Trial Recruiting 1,350 High-Risk Individuals for HIV Vaccine Study"

There's a video at the Hope Takes Action site ( that explains there's no virus in the vaccine and so no chance of being infected by it; and the researchers managing the 3-year trial offer a lot of education, encouragement, and comfort (as well as hope and pride) for trial participants. UT Southwestern just joined the list of about 20 top medical centers now recruiting for the trial, with more to come. – C


Note: This information has not been evaluated by the FDA. It is general and anecdotal, and is not meant to prevent, diagnose, treat or cure any condition, illness 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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One thought on “From Our Readers – Comments & Suggestions – 09-22-10”

  1. welltrvld says:

    S –
    Don’t believe for an instant that your weight is causing your fibromyalgia. Your sleep disturbance, autonomic dyfunction, and debilitating fatigue is causing you to gain weight.
    I am a 55 yr old male who used to be pretty athletic, with a fairly large frame. I also have FM (possibly caused by a congenital immune deficiencey, that was only recently diagnosed).
    After receiving IV infusion therapy every three weeks, my energy level is back by 50 – 70%, depending on the day. My weight has dropped from 208 (34.5″ waist) to 178 lbs (31.5″ waist). due to the infusions and Dr. St. Amand(sp?), the UCLA endocronologist’s hypoglycemic diet, and a small amount of exercise. BTW, I am 5-10.5″, and my optimum, pre-FM weight was 187 lbs (32.5″ waist).
    You are right that being overweight exacerbates your FM, and I still have to be careful about about over doing it, with rebound pain & fatigue an ever present possibility, along with orthostatic hypotension and the heart arrythmias. My sleep has improved, but it is still far from wonderful. It was so previously disturbed, that I actually tested positive for narcolepsy.
    Anyway, my life is improved with my IV immunoglobulin therapy every 3 weeks (the deficiency causes it’s own profound fatigue), but I’m ever cognizant of the fact I still have FM – and it still raises its ugly head if I don’t pace myself. Good luck in your battle – believe me, we all have had to deal with the “Doubting Thomases” in our lives, having this disease. I,for one, can tell you unequivocally, your weight did not cause your FM, it was the other way around. God Bless & Good Luck…

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