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What were your first symptoms of ME/CFS?

  [ 18 votes ]   [ 3 Comments ]
By Mass CFIDS/ME and FM Association • www.ProHealth.com • April 1, 2015


What were your first symptoms of ME/CFS?
On February 10, the IOM released its new diagnostic criteria for SEID (ME/CFS). There are only three required symptoms: six months of fatigue, post-exertional malaise, and unrefreshing sleep. An additional requirement is either 1) orthostatic intolerance and/or 2) cognitive impairment.

Are the new IOM diagnostic criteria accurate for early onset illness? Or will they miss patients who have only recently contracted ME/CFS?

And if recently ill patients are left undiagnosed, what are their chances of receiving appropriate treatment and medical advice?

To find out whether the new diagnostic criteria will encompass recently ill patients we need to know what the initial symptoms of ME/CFS are. The only people who can answer that question are the patients themselves.

What were your first symptoms of ME/CFS? Let us know in our short 3-minute survey. 

The survey, offered by the Massachusetts CFIDS/ME & FM Association, will be open until midnight (U.S. Eastern Time) April 17, 2015. 

You can take the survey HERE.

Why a survey about early onset symptoms?

The evidence used by the IOM Committee to determine the diagnostic criteria was based primarily on studies of chronic patients who are ambulatory and can get to specialized clinics. There has been little research done on the newly ill, the most severe bedbound patients, and those who do not have access to specialized clinics.

We need to develop a base of knowledge about one of these groups, the newly ill.  We wonder whether the symptoms experienced by the newly ill would look the same as the chronically ill (over 3 years) since there is evidence from a recent study performed at Columbia that the biological process may be different in the early stage of the disease.

This survey should provide an indication of whether the symptoms at the beginning of the illness will be easily recognized using the IOM diagnostic criteria.

Summarized results will be presented to the CFSAC IOM Working Group, which is preparing material for a full discussion of the IOM report in the next public meeting of the Chronic Fatigue Syndrome Advisory Committee.

If you are an ME/CFS patient, we would love to have your response. Thank you for participating in the survey!

Click  HERE.



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Article Comments Post a Comment

I left out an incident that may or may not have led to my having CFS
Posted by: ppmickey
Apr 9, 2015
I went with my parents to my brother and sister-in-laws house when I was still working. They had built a beautiful new home and put in two ponds in the back. Between the mosquitoes and the Lone Star Tics, we were being eaten alive. I had them breaking on my back and legs and chest when I showered and when we all got home, my husband removed about 30 more I hadn't seen. I then went over to my parent's house and removed about 20 tics from each one of them with a tic removal device I'd gotten at R.E.I. in Cary, NC.

My husband had me take one of the tics to the Health Dept. It came back as being a Lone Star tic but hadn't sucked up any of my blood yet. I had also gotten a dog tic that woke me up one morning and I actually gouged skin out trying to remove it. I'd been squeezing it trying to figure out what it was. I could have a mixture of viruses that makes me so exhausted. The only drugs that make me feel normal are the now banned (Phen-Fen) combo and Capmist, which I cannot afford to buy.
Reply Reply

 
The comment at the top
Posted by: graceZ
Apr 11, 2015
i hope you got tested for Lyme Disease. your commentary is excellent. We Lymies lookung for help with our chronic symptoms need to be included in any research. I did tge survey and left a lengthy comment. I am too tired to write more. You are not alone. please go to Lymenet.org.

 

 
cary Mc
Posted by: graceZ
Apr 11, 2015
I just noticed you're from Cary NC! I live in Cornelius.

 

 
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