OH! This is terrible! Who, what doctor got you on SSD in the first place? That would be the person to help you. This same thing happened to my daughter. She has lupus and is bi-polar. Her Rheumy was good enough to take her paper work an do it. My daughter did not get denied on her appeal.

I can't believe they are taking those of us disabled with this hideous illness and putting us through the "prove it to me " stage all over again. What a slap in the face.

Again. I would try to get to the doctor and the initial work up you had to get on SSD in the first place. Is that possible????

When doctors prescribe anti-depressants for chronic illnesses like ME/CFS, it's not a matter of convincing them of your symptoms...it's an issue of competence.

A doctor who treats patients with serious physical illnesses with medication that's appropriate for mentally ill patients is a doctor who is engaged in malpractice. After I got my diagnosis, I saw several doctors for various things like a broken bone in my shoulder. Not one of them had any knowledge of what ME/CFS was...they were all totally ignorant about the illness.

You can't assume that someone has knowledge of common illnesses just because they have a medical degree anymore. I don't know what they teach them in medical school these days, but they seem terribly ignorant about medical matters based on the experiences I've had with the doctors in my area.

I think Darla gave you some good advice. The idea of being able to work just because you can sit up for 6 hours is ludicrous. That is like saying your breathing, you can work. What company will employ you to just sit for 6 hours. I have had a CFS doctor that has made it clear I shouldn't be doing much driving. As a result I am working from home and just getting by with it. Good luck with your battle and don't give up.

I worked in the medical field for 10 yrs. You need to change doctors. You need to find a doctor who has worked with cfs/fm. I had a doctor for the past 7 years who was wonderful, he just moved, the first thing I did is I told my new doctor I was disabled from cfs and fm and does he know anything about it , and that my last doctor was my advocate with disability. I listen to his response, he was very compassionate and said he has worked with very few cfs/fm patients, but he knows it is a very complicated disease, then he asked about all my symptoms and my past experinces with my health. You want a doctor who will listen and listen to what you tell him about your body, be proactive , you know your body best, walk in with confidance and let him know you know your body. A lot of doctors still do not accept fm and cfs, your not going to change their mind. Sometimes it takes going through a few doctors to find the right one. A lot of doctors do not want to deall with disability. Ask around who other people you know are seeing if their on disability, local lawyers are helpful to, they can be your advocate and tell you which doctors support disability. I know it sucks to have to do so much pushing when you have no energy already, but in the long run you will get the disability. Good luck

Thanks for all your replies. Sounds like I will have to continue my search for a doctor familiar with CFS. They all say they are familiar when I go for the first visit but then the prescription pad comes out. Here in the mid-west I don't think the doctors are as progressive. I think that they are unwilling to vouch on a legal document on this condition because there is no medical or blood test -just "patient reports feeling...". This whole ordeal has made me feel like I am just faking or being lazy. It is so good to come on this site and be with others in the same situation.

I still have my SS disability coverage, thankfully. But several years ago I lost my long term disability policy that was through my employer. The reason: one of my doctors said I was able to sit for 15-20 minutes, as long as I took a 15 minute break afterwards, and could then go back for another 15 minutes. Ummmm....what employer would allow that kind of work ethic? My primary doctor tried to reason with them, but they wouldn't budge. Social Security was more understanding. But, I may be up for review in a year or two, and am concerned about dealing with that. I hope you find a doctor who can help you with the process.

Can you google cocure.org????

They have a "good doctor's list" for us and you may find one in your area!! It's worth a try!!

Wishing you the best!

I'm also trying to find a good doctor somewhere in the Midwest, Southbound. I feel your pain. Please, let me know if you find one. I am about ready to drive out of state to Michigan or Canada! lol

My favorite resource for legal things that deal with CFS is http://www.cfids.org/resources/legal-issues.asp. It was so helpful to me in educating my attorney & others when applying for Social Security disability.

When you click on the Social Security link on the above mentioned page it takes you to a page which mentions a case ruling where it proves that CFS is a disability and shows the requirements needed to be shown by a doctor to verify correct diagnosis & eligibility for receiving benefits. (Click on the case ruling link and you can see all the details and specifics.)

It was so helpful for me to know this info and then I believe it helped make my case as well (I've been on SS disability for 4 years now and survived through 1 renewal of benefits).

Educate yourself and others and don't feel bad about it! I had to help educate my primary doctor about CFS and thankfully was referred to a local CFS specialist for a complete/final diagnosis. My primary care doctor really has come to bat for me with helping me with disability as he also educates himself on this illness. If you are in KS or nearby, message me and I'll give you the contact info for these doctors. Hopefully they can help you & others too!