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Joined: Aug 21, 2011

myalgic encephalomyelitis

Posted by @mytfrog, Aug 21, 2011

I don’t see ME postings. My niece at 49 was originally diagnosed with MS and 4 herniated disc, 4 months later MS was ruled out and ME is the current diagnosis. She is having difficulties even finding doctors willing to give her in depth direction and treatment other than pain medicine which doesn’t even touch the pain most of the time. Whatever is happening hit her fast and hard. Any one have any thoughts on how to get proper treatment? 4 months of suffering and no improvement is difficult to deal with. ME isn’t even listed on this website as a topic. Thanks in advance.



Posts: 4
Joined: Oct 26, 2011
Posted by @elegiamore, Oct 26, 2011

ME is considered chronic fatigue syndrome on this website, Anon. Go to that section. There are only a handful of doctors that treat in the U.S. – Dr. Charles Lapp, CHarlotte, NC, Dr. Nancy Klimas, Miami and others that charge as much as $10,000 a visit (Dr. Cheney, Asheville).
Google “Hummingbird Society” in Australia for a great ME website and LOTS of good help – they are also publishing a book soon on the topic.
Also join the CFIDS Association in Charlotte, NC and get on their mailing list.
Where is your niece living? Probably overseas as the condition is called CFS in the U.S.
Industry standards state that you do NOT have a diagnosis of CFS or ME unless you have been sick for six months+ and no other conditions surfaces, so that may be why no doctors are really helping. GET TREATMENT – M.E. has lead to heart failure and endless more for me and I now have a very poor survival prognosis – ever with excellent treatment. Feel free to email me if I can help further.


Posts: 3
Joined: Dec 11, 2011
Posted by @comebackshane, Dec 11, 2011

Please save yourself a lot of wasted time and money. Skip the Mayo for ME (CFS). I went to the Mayo in 2007 and was quickly dismissed as a psych patient. The endocrinologist even mislead me about a review of my past brain MRIs that showed a number of issues.

Compare the Mayo CFS website with Stanford site: There’s a world of difference and at Stanford you’ll actually receive effective treatment from someone who recognizes ME(CFS) as a serious immune issue with infectious CNS implications. The Mayo on the other hand has adopted the British/CDC model which is frightening in its willful ignorance of the real nature of this disease.


Posts: 1
Joined: May 10, 2012
Posted by @jcfsme, May 10, 2012

I sort of agree with ComeBackShane, Even though I was diagnosed with Chronic Fatigue Syndrome I kind of feel grouped together with fibromyagia patients. These are two seprate illnesses. The doctors in the US need to call this serious neurological/immune system illness by the name known in the UK as Myalgic Encephalomyelitis. I feel like the class the doctors send you to at the Mayo are a joke for the CFS/ME patient. I recieved better and more effctive treatments from holistic treatments and using low light laser treatments at my chiropractor’s office( Dr. Eric Cram Chiropratic and Wellness center Northfield MN) than a 2 day class on how to relax yourself. Graded exercise should never be a part of a CFS/ME patients plan of recovery since this could have serious repercussions on the patient’s health.

Liked by sklilleoien


Posts: 1
Joined: Jun 11, 2013
Posted by @sklilleoien, Jun 11, 2013

Skip going to mainstream doctors… I spent literally THOUSANDS of dollars over a period of 20 years being misdiagnosed when not ONE physician at Mayo Clinic [among many other clinics and hospitals] ever ran an Epstein-Barr titter on me. Had they done that I would have had answers years ago and I may not be in a wheelchair now with multi-organ dysfunction.

That’s my opinion.

I went to a Naturopathic Physician and he has been following symptoms and treating me naturally when possible. It works and it’s much better than the 17 different medications…. 23 pills a day… that I was on when I was seen at Mayo Clinic.

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