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From Our Readers: Comments and Suggestions – 2/4/15

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Misery Doubles Down 

Re: VIDEO: Misery Doubles Down

After 30s of this at age 75 I’m sad to think that there have not been people who can stand up and be heard. Recently advocates for Chiari Malformation had an auction of celebrity shoes. And the really amazing stunt was arranging for the lights on Niagara Falls to be colored purple (apparently their advocacy color). Great for them. That’s wonderful. But why do we not see this for ME? This video is informative and should be on TV and not just on YouTube although I’m grateful it “is” on YouTube Thank you for all these alerts and for this particular “Misery Doubles Down.” ~Posted by: grannycfs, Jan 6, 2015

Do “I” Care About M.E.? 

Re: VIDEO: Do You Care About M.E.?

Yes I do. After 30 years at 75years of age, I’m about giving up on a social life of any significance. I’m in survival mode. At my diagnosis with Dr. Lapp I was Moderately Ill with CFS/FM. Many of my symptoms were helped by a variety of medicines and acupuncture. But as I aged – new disorders on top of ME/FM have nearly stopped me in my tracks. My mind was not great but now its really bad. Nobody understands. I was told recently to walk thru the pain. That person didn’t realize my pain was from osteoarthritis and balance issues from neuropathy. I recall hearing about an advocacy group for Chiari Malformation lighting up Niagara Falls. Why don’t ME advocates generate that kind of awareness. They were also auctioning off celebrity shoes. Surely there are people who in the past 30 have the kind of connections to arrange that sort of thing. Care – I Care!!!! ~ Posted by: grannycfs, Jan 6, 2015

Could Chronic Fatigue Syndrome be related to Thyroid disease? 

Re: How “Chronic Fatigue Syndrome” Obscures a Serious Illness

I wonder if these sufferers have had their thyroid checked. Here in Australia there are a lot of people who have been left to suffer from so many debilitating symptoms and who eventually are diagnosed with some form of Thyroid disease. The doctors aren’t trained properly in diagnosing Thyroid disease and even if tests show that the patient could be suffering from a related illness they don’t do the necessary tests or follow up to properly diagnose and treat. We need more doctors to be able to diagnose and treat these debilitating Thyroid diseases. I for one have gone for five years without treatment when I clearly had all the symptoms and even my blood tests levels were high but not all the tests were done to find out what the problem was so I went undiagnosed. Now I’m being treated (for Hashimoto’s) I am slowly becoming free of symptoms. A lot of my symptoms also mimicked Chronic Fatigue Syndrome. I know of a lot of people in the same situation as me. ~ Posted by: Lynzo777, Jan 7, 2015

Yes, I went through all of this after I contracted a virus at age 15 going on 16. I was put through all of this rubbish. I was a gold medal level Ballroom dancer but could no longer do anything much. Changed the whole course of my life and has taken years of trail and error with alternative treatments and meds to slowly improve to where I am now, but I’d say, I will never be 100% as I have suffered more viruses since the first original one. Doctors need to wake up and realise it is a real illness and not one that is all in the mind. We are not NUTS. ~ Posted by: Andalusian, Jan 8, 2015

I did find out 3 years ago that my numbers were off and began treatment for hypothyroidism. I have had ME/CFS symptoms since 1993 after a back injury resulted in herniated discs in my lower back. At the same time (3 years ago) I found out that I had gluten sensitivity. I have been on a Gluten-Free diet since yet I am still very ill. I wonder what came 1st. I have no way of knowing. I had lyme disease in 2000. I have had c.dificil twice, in 2005 and again in 2010.and had been on nexium for about 10 years until 2010 because I also have GERD. My opinion … It’s all related somehow. I also had Rocky Mountain fever as a child. And dysentery in 1978. ~ Posted by: terriejw121, Jan 9, 2015

What a heartbreaking story

Re: David’s Story

What a heartbreaking story. I feel so sorry for the parents and family of this young man. As a mother (with serious ME/CFS), i can imagine the suffering he was going through and that no-one listened to him or his family must have been so traumatising. I am grateful that i have this illness and not one of my children. I sincerely hope that one day, the medical profession in all countries across the world will take notice of the devastation this illness causes, so that young people like David get the treatment they need and deserve! How cruel and callous that this goes on! ~ Posted by: vivienhome,Jan 10, 2015.

PAWS not even real

Re: One Year Later – Karina Hansen Still Confined in Mental Ward

I find it very revealing that, in the two to three years since this syndrome was invented, that there have been no publications discussing it. Nor is there an entry in the ICD, the standard reference for psychiatric conditions. This syndrome has apparently never been defined, which means that the symptoms are whatever the local psychiatrist says they are. PAWS is a total fabrication that is (once again) being used to deny medical treatment. The court and state involvement are hard to fathom. What is the gain to the state for imprisoning and torturing this young woman? Why will the courts not recognize applicable legal documents (i.e. power of attorney)?  This all really makes me wonder whether one or another government is responsible for creating this disease – whether chronic Lyme disease similar to a Plum Island biowarfare project, or mycoplasma as suggested by Dr. Garth Nichols and possibly tested in the Incline Village (Nevada) High School, the real site of the “Lake Tahoe Outbreak” that the CDC never investigated. ~ Posted by: Gerald Campbell PhD, Jan 17, 2015

False Hope

Re: The Biggest Chronic Fatigue Syndrome Treatment Trial Begins: Fluge/Mella On Rituximab

I have ME/CFS. I had four infusions of Rituximab which lasted six hours each. Only the first one worked and I believe the drug caused permanent cognitive issues above what is present In ME/CFS. I believe this drug is harmful and this study gives patients false hope. I hope I am wrong. ~ Posted by: shewolfdc, Jan 24, 2015

Toxic Mold and problems following

Re: New Theory Links Neurotoxins with Chronic Fatigue Syndrome, Lyme, MCS and Other Mystery Illnesses

I ended up on this site after watching Forensics File on TV, a story about a family whose home was affected by toxic mold, and how it affected the husband, their 5 year old son and his wife, who created the POA website, designed to protecting people and provide awareness of toxic mold on their health. My oldest sister I believed who died last year, started with the mold I found in her apartment after admitting her to the hospital for heart pains, headaches, stomach aches, and constant mood changes. She ended up having an angiogram, hematoma bleed, code blued twice, and then on life support for four years, from one neligent thing to another in the hospital care, which ended her life March 19, 2014. I too was her power of atty and visited her home many times, spent the night and would always feel sick there and have headaches. I know have fibromyalgia and chronic fatigue. I got a toxic mold kit for her house, tested, and it came back possitive for different types if mold. Which was only painted over by the apartment owners. ~ Posted by: tgcoleman, Jan 27, 2015

It’s about time!
Re: Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey
if we do not take the time to answer surveys and make her voice is heard it is my believe that people who suffer from chronic fatigue immune deficiency syndrome will continue to be seen at best as second-class citizens who are not worth the disability funds they receive and at worst individuals who need severe psychiatric help. I hope this message gets scene by many people and that many more will participate. It is only by making our voices heard, will money be invested into research of this curable I believe disease. From what I have seen on the web from people who suffer from chronic fatigue immune deficiency syndrome and that many of them have had good success with non prescription medications this is something that I am very interested in and think that money should be invested into looking for a non prescription way of being able to treat this disease instead of padding the pockets of the pharmaceuticals. I’m sure there are a number of people who will disagree with me, however, for some people who have to take a lot of medications already, adding more to the list I do not see as making the quality of life any better. I believe quantity of life is less important than the quality of life for me quality is everything. ~ Posted by: pookiebear364, Feb 2, 2015

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