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From Our Readers: Comments and Suggestions – 10/19/16

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Mayo Clinic Information 

Re: Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I

I have been diagnosed with EBV, CFS/ME/Fibromyalgia since 1994. As I have aged various other issues have arisen; POTS, LUPUS, Crohn's Disease, etc., etc. Inflammation, almost constant pain that moves around the body, severe fatigue and cognitivee challenges (FIBRO FOG)continue to be severe enough that, for the majority of time, I remain house bound.

I would very much appreciate any information you may have as to how to approach, apply and ultimately become tested/treated by the Mayo Clinic, in New Your. I do have what I consider to be very good insurance. My issue would be putting the pieces together so that I might be considered a candidate for treatment.

I live in California and perhaps there are similar clinics that are geographically closer. Where might I find this type of information? It is challenge for me to type for any length of time, and like right now, extremely difficult to process complex information or reports, etc. Any information you would kindly share or any options you may suggest would be greatly appreciated. Thank you Iron Man for your courage and Thank YOU Cort for making sure we all have the latest and most trustworthy information about ME/CFS/POTS….Bless you and thank you in advance for your assistance. Sincerely, Pam Roome' ~ Posted by: many turtles, Sep 22, 2016
CFS and Fibromyalgia 

Re: Why Is Chronic Fatigue Syndrome Still a Mystery?

I have dealt with this debilitating fatigue for 2 and a half years. I don't have the severe, bone-crushingly heavy fatigue every day but when I do it's a struggle to even eat and take my medication. Other days start off quite tired but by about noon (after getting up at 7 or 8 AM) on some days and by about 3 PM on others, I am able to function at my usual state. The usual state is far below what used to be normal for me but it at least allows me to accomplish some things as long as I rest regularly. By that I mean I can recline in bed and look at the computer and get up occasionally to do something out of bed for a few minutes as long as I come back to bed and recline again when I feel tired. Sitting down is not enough. I have to actually recline. Sorry to go on so long but I'm trying to explain how I live with this condition. I clearly no longer work because it is impossible when you never know if you'll be able to get out of bed the next day. 

I was diagnosed with fibromyalgia back in September of 2014 because of the pain and fatigue and morning stiffness. But the fatigue can be so severe that I wonder if I also have CFS. I asked my PCP once and he said "probably" but didn't pursue it further. Should I try to get an official diagnosis? Or should I just accept that fibromyalgia can also be accompanied by severe fatigue and that's what I have?

Yesterday was one of those mega-exhausted days and I was wishing so desperately that someone would figure out a way to help me. If every day was like that it would be really hard for me to stay positive and not get too depressed. 

Thank you for trying to explain to people what this "fatigue" is like. I know I had never felt this type of exhaustion-fatigue until I first became ill at the end of March 2014. Sometimes it literally feels as though my body is starved of oxygen or some other necessary nutrient and that if I don't lie down I'll starve to death. It feels like heavy weights are pushing me down and it's almost more than I can do to even move my arm or push a button on the remote control.Even opening my eyes or trying to talk is exhausting. It's unbelievable and hard to describe to anyone who hasn't had it. 

How can we change this situation so that more research is done to find a way to help us?  ~ Posted by: AuntNini50, Sep 21, 2016

A very interesting article on a very real, misunderstood illness. I have been battling with CFS/FM/ME since 2000, when I was 42 years old. When diagnosed, I was so fatigued, and went through what neurologists called "sleep seizures", I could barely lift a finger or stay awake. This then turned to not being able to sleep. Western medicine was baffled. I sought acupuncture in Ontario, Canada, which is where I live. Dr Tran was an amazing man who helped me recover up to 60% of my energy. I saw him 3-5 days a week, and had a semi-normal life. Not always 100% of my new 60% energy, but pretty good. In 2004, after Dr Tran closed shop, I began taking NAET treatments (Nambudripad's Allergy Elimination Technique), a form of acupuncture coupled with various elements representing various things from glands, organs, foods, hormones, etc. These treatments by Derek Roche in Ottawa, Ontario, helped me tremendously. I went on to be an athlete once again, always functioning at 50% of my new 60% energy level. This new energy was awesome. However, in 2013 I became dabilitated again, with fatigue. This was something new, and I was diagnosed with Adrenal Fatigue. At this time I was unable to afford treatments, but 4 months ago, I felt I would absorb the cost somehow, and went back to NAET Treatments. Once again, my body is responding well, and I am feeling much better. Now 50% of my energy instead of 60%. However, I cannot expend much energy to do athletics, and notice even day to day stress can cause a fall. Is this CFS/FM/ME or what? Your article is very interesting. Western medicine does not recognize any of this illness, or doesn't know what to do with it. Thank you for your article, I appreciate the recognition that there is definitely something wrong with the medical system we have. ~ Posted by: chdeevey, Sep 22, 2016

GET and CBT Victim

Re: Experts, Advocates and Patients Call Release of UK QMUL PACE Data "A Gamechanging Win for People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Based in the UK, I developed acute onset ME following a tonsillectomy and coincidental upper respiratory viral infection. Sadly, after the normal National Heath Service 'guess the diagnosis' approach, that being broad spectrum antibiotics, it was, as standart assumed to be 'all in the mind' to fit in in with popular, unproven psychiatric THEORY and low cost treatment. Consequently in went CBT, GET and a tricyclic antidepressant, with the firm belief that it was post infection depression causing my symptoms.

After six weeks, I felt so much worse with every symptoms considerably intensified, so that rather than being better, I was significantly worse. In addition, my major symptom BEFORE treatment of postural hypotension was ignored and yes, the major side effects of the antidepressant was weakness, hypotension, insomnia, in fact the best possible drug to amplify all symptoms.

Subsequently, I refused any National Health Service treatment, and have instead paid the full costs of private health care, where tests conclusively proved that the treatment given by the National Health Service as GET and antidepressant medication was the worst possible treatment that I could have been given. Now, with private medical treatment two chronic viral infections have been removed, one antibiotic abuse induced fungal infection removed, drugs given to increase my blood and pulse pressure, and tests that point towards calcium ions being uncontrolled, indicative of an immune dysfunction, with a bias towards inflammation. This, at least provides symptomatic relief, and a target for further treatment. ~ Posted by: AndyTheJaw, Sep 22, 2016


Re: Ampligen Takes Big Step Forward – Becomes First Drug Approved Anywhere For Chronic Fatigue Syndrome

I got sick after visiting Incline Village in 1986. It has stolen my life. I am 75 years old. Do you think I'll have Ampligen before the end of my life? I don't think so. I've been waiting 40 years for Ampligen to be approved so I've given up. Please let me know if I can expect a miracle. Thank You. ~Posted by: 7rachelb27, Sep 26, 2016

Inconsistent with personal experience

Re: Low putamen activity associated with poor reward sensitivity in childhood chronic fatigue syndrome

My daughter has had ccfs and primary juvenile fibromyalgia since infancy. Yet, she studies any and every subject, just for fun. She has a very strong motivation to learn, and sets herself tasks, such as learning a foreign language – for pleasure. If that's not reward sensitivity, then what is? Her mind is active. It is her body that is not active. So, having lived with a case of CCFS, I find this study to be about as believable as the PACE trials, and I hope it's not for similar reasons.

Only 13 children with CFS were included in the study. Another question that I have is the criteria used for identifying children with CFS. 

All in all, I feel that the jury is still out on this. 

Another thing I'd be interested in seeing is a comparison if these same measures, in a person who is well, and then later when the same person has the flu. If children with CFS have a low motivation to learn, my experience is that it would be a symptom associated with the severity of illness — the less energy and the more brain fog a child has, the less motivated they are to attempt new learning. It's difficult to learn, when you can barely remember your name. That's not a motivation problem. That's a functional brain problem.~Posted by: dfwmom, Oct 13, 2016

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