From Our Readers – Comments & Suggestions 01-05-11

Let's Educate About FM/CFS as a Disease of BOTH Men and Women!

Re: “US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment”

I hate seeing this stuff being so injust to men with FM/CFS! I understand this whole thing came from a women's magazine but why could they not include data about just how many men are suffering from this affliction, disease or whatever you wish to call it?

I am a 41 yr old man that has suffered with FM/CFS for almost 20 years now since I fell ill during the Gulf War. As with most women, it took me 12 years to get a proper diagnosis, 3 more to get disability, and now I can't function well enough to stay out of bed for more than 8 hours a day if I am all drugged up to do so.

I suffer just as much as women do; I have the same issues, yet they completely ignored the fact that men have this disease. Every time I read stuff like this it makes me sick. Are men going to get to be seen in the world of FM/CFS? When is the first or last time you have seen a commercial on TV or radio that depicts men suffering from FM/CFS? I sure as hell haven't! EVER!

I believe in the equal rights of all, so don't think to yourself "well now you know how women felt during the equal rights fights for women." I was not part of anything that ever opposed women's rights, so it should not be part of this. I want to see people learn about FM/CFS as a disease of both women and men, not just of women! But it won't happen any time soon I'm sure.

Other than the fact the study was made only about women, at least there is a good set of numbers now to show how widespread this is, but think just how much more aware the world would be had they read combined numbers instead of only on women. Good night! – S

I understand the frustration men who have fibromyalgia suffer in addition to suffering from the… symptoms we have as a result of fibromyalgia…. What is needed is a push to have more gender-specific studies done of men who have fibromyalgia. If men would contact the leading fibromyalgia organizations and ask for their help in getting researchers to do this, it could benefit not only men with fibromyalgia but all of us as well. One of the problems with the "legitimacy" of fibromyalgia in the past seems to have been gender bias toward women – their suffering was seen to be all in their heads. (In the 19th century, women's suffering was believed to come from the womb, thus it was called hysteria, and hysterectomy became the "solution.")

Getting doctors and the general public to understand how this affects all of us will only make things better. – S

Agree with the need for better awareness. I totally agree with need for even better awareness among medical physicians. I was admitted in July to a hospital in South Carolina for a blood infection… The pain was agonizing. Also having fibromyalgia, the pain was highly intensified. The doctor who had my case would not even give me enough pain medication to make me comfortable. I do not know if it was disbelief in fibromyalgia or simply in giving pain medications. I can honestly say it was one of the worst physical experiences I had ever endured.

I believe it should be a requirement for physicians who are not educated on the subject of fibromyalgia to do so. – L

Men and fibro. As I read the article all I kept thinking about was how they keep forgetting about men and fibro. I am happy that you spoke up about being left out. I am sorry that they never mentioned men in the article and I hope that in the future there are more balanced article respecting both sexes. I feel for you and know your pain. – L


ME/CFS Patient Survey Responses on Effectiveness of 81 Treatments

It has recently come to my attention that the site is surveying people with CFS to find out how effective various treatments and lifestyle changes are. On this site, they have a graphic that plots both the effectiveness and the popularity of a whole range of CFS treatments and lifestyle adjustments:

See how the ratings there compare with your own experience. [Note: Most often tried improvement strategies/treatments are to the right, most effective in the darker green strip along the top, least effective in the pink strip at bottom. Hover your mouse over any one of the blue dots on the grid to see what it represents.]

Of course, this type of informal survey has its limitations in terms of statistical reliability, but I think it can give us valuable clues.

Best regards,
Rich Van Konynenburg, PhD


Lyme Training for MDs

The International Lyme and Associated Diseases Society (ILADS) and the Turn the Corner Foundation offer a training program that “provides medical and other healthcare practitioners the opportunity to study with Lyme-literate healthcare professionals,” to help them learn how to diagnose and treat Lyme properly. There is a stipend for the training. To read more about this, and to download a physician training program application, go to the ILADS site: – H


More on Vitamin D and Autism

Re: "Neonatal Jaundice, Autism, and Other Disorders of Psychological Development," citing Dr. John Cannell's "Vitamin D theory of Autism"

Here's a fascinating article on the subject, published in the Summer, 2010 issue of Columbia magazine: "Autism, Unmasked: The causes of autism are multiple and mysterious, but Columbia scientists say the disorder's secrets will soon be revealed." by David J Craig.

A couple of quotes regarding the work of Columbia autism researchers W Ian Lipkin and Mady Hornig, who are studying how environmental factors may act with genetic susceptibility to be "the final straw" that triggers the illness:

“When they looked for metabolic differences between the Norwegian children [in a large population tracking study] who’ve been diagnosed with autism versus those who don’t appear autistic, they discovered that the autistic kids are three times as likely to have elevated levels of a protein found in people who are vitamin D deficient; the body produces it in a desperate attempt to squeeze as much benefit as possible from the vitamin D that it does receive. If Lipkin and Hornig can find further evidence that a shortage of vitamin D contributes to autism, they’ll look for genetic markers that could identify a child who is susceptible to vitamin D deficiency. They’ll also consider if additional risk factors can combine with vitamin D deficiency to make a child autistic….

“[Dr. Hornig ] demonstrated in laboratory studies that mice who experience viral or bacterial infections early in life go on to display autistic-like behaviors: They avoid each other and do back flips obsessively. Hornig suspects that a lack of vitamin D can exacerbate the dangerous effects of an infection, as the vitamin is known to bolster the immune system. 'If this turns out to be true, the clinical implications would be clear,' says Hornig, who hasn’t yet published the findings on vitamin D. 'If your baby has a severe infection, this could tell doctors to watch his vitamin D levels, and maybe even give him vitamin supplements as a precaution.'” – E


One Way to Recycle Those Unwanted Gifts

Unwanted Xmas presents. Seems to be a rite of Xmas to receive these, huh? I put items on freecycle ( I love it… It’s great for we who don’t have cars. – S

Note: You join a local group (there are almost 5,000 of them) to view posts by companies, organizations and individuals wishing to give away unwanted items & to post about items you would like to give away. It is a nonprofit activity. We checked it out and found that our relatively small town has hundreds of listings every month. As always, avoid sharing personal information.


EPA to Publish List of Potentially Neurotoxic Chemicals in Consumer Products

Re: "Risky Business: EPA Builds List of Potentially Dangerous Chemicals"

Examples of chemicals the EPA list will contain ( ) include aspartame, ingredients in plastic bottles & can linings, DEET and other pet & home insecticides, dry skin lotions, and more. – A


Antibiotics and Food – Nutrients to Avoid and To Emphasize

Here’s an article from the Chicago Tribune that’s directed to parents of kids on antibiotics but might be relevant for everybody? [“Children taking antibiotics must be careful with their diet”]

For example I never would have guessed that milk and foods with lots of iron could interfere with antibiotic effectiveness. – N


FM Drug Market was $1.1 Billion in 2009, and Growing

Saw this news release on the Co-Cure Listserv – "FMS Medine Market Estimated to Grow to $1.5 Billion in 2017" BIG business. It states:

“GlobalData estimated the global Fibromyalgia Syndrome (FMS) market to be worth $1.1 billion in 2009. It is estimated to grow at a Compound Annual Growth Rate (CAGR) of 4.5% for the next eight years, to reach $1.5 billion by 2017.

“The growth will be driven by several factors, such as escalation in FMS prevalence and the unmet need prevailing in the sector. Barriers for the FMS market include inadequate knowledge of the disease, moderate treatment seeking and low diagnosis rate.

“The growth in the period 2001-2009 is attributed to the launch of the three branded products, Lyrica, Cymbalta and Savella, in 2007, 2008 and 2009 respectively.” – T


Symptoms and Causes of Carbon Monoxide Poisoning

The website has good information on carbon monoxide, which you can't smell or see. ["Carbon Monoxide: The Silent Killer"] When it isn't bad enough to kill it still causes lots of symptoms we might think are part of MCS or CFS/FM – headaches, dizzy, weak, confused, nausea, etc. etc. One tip is to always use the ventilator fan or other ventilation when you're cooking on your gas stove. – P


In My Shoes – An ME/CFS Story

Another great link found on Dr. Lapp & Dr. Black's Hunter Hopkins Facebook site – the "It's only ME, it's not my mind" blog. I liked "In My Shoes", a post about shoes this ME patient used to wear – hiking boots, office shoes, etc. And when socks got more important, how she started a project called Send in a sock to represent yourself or someone you care about who has ME/CFS. Pictures of the socks yet to come. Sounds kind of fun! – C


My New Favorite Saying

I ran across this saying just yesterday – "When all you can do is all you can do, then all you can do is enough." – N


Dr. Myhill Judicial Review Set for "Mid January" – Right to Practice Restored Jan 6, 2011

After making a "preliminary submission" on Dec 23 of legal arguments regarding her case against the UK General Medical Council's Interim Orders Panel for human rights violations, ME/CFS doctor Sarah Myhill is to have a judicial review before the High Court in "mid-January." The IOM had revoked her right to prescribe medications for one year for such reasons as suggesting the potential benefits of vitamin B12. But in breaking news, restored it Jan 6. Advocates can visit the Support Dr. Myhill Facebook site to see how she fares going forward against a medical establishment that continues to consider ME/CFS a bio-psychosocial disorder. – P


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 plan.

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