From M.E. back to "me"

FInding a skilled attorney who specialized in disability is crucial. Interview them and make sure they are familiar with ME/CFS and have represented other clients with your illness and won. Social Security attorneys work “on contingency,” which means that they collect a fee only if they win your disability claim. Whether you are applying for SSDI (Social Security disability) or SSI (Supplemental Security Income), a lawyer will work on your case without making you pay until the end of the case. Even if your case goes on for years, an attorney will not get paid until it is over (and won).

Most of us with ME/CFS have a mile long list of symptoms. Stick to the ones that actually prevent you from doing your job. Listing your digestive issues or high cholesterol is only going to draw attention away from the severity of your disabling symptoms like fatigue and post exertional collapse.

ME/CFS diagnosis relies mainly on your description of symptoms. Make sure you are clearly explaining this EVERY TIME you see your doctor. Write it down ahead of time and give a copy to your doctor. Make sure you tell him you would like it added to your file. This is especially helpful if you have cognitive difficulties. Make sure you explain the way the symptom impacts your life. Don't just say "I'm tired all the time." Use phrases like, "I did some dishes and had to lie down for two hours." or "I pushed myself to get a shower and go to an appointment which only took an hour, but then I ended up in bed for 4 days." Don't ever assume anyone knows what you mean by tired. Explaining ME/CFS fatigue to someone who doesn't have it is like explaining what colors look like to a blind person. There's a good resource below in the links section on explaining your disability to your doctor.

This goes hand in hand with number 3, but deserves its own attention. Keep an hourly log of everything you do. Make sure to log a good day, a bad day and an average day. Include everything from how long it takes you to get out of bed. Make comparisons of how long it used to take to do an activity before you were sick. Accommodations you need to make, like a shower chair or help you needed from someone else. Make sure to note the length of rest periods after an activity and how you were feeling (dizzy, out of breath, couldn't think clearly). You want to demonstrate cause and affect to explain post exertional malaise. Because it is always likely you might look perfectly healthy when they meet with you. They need to understand what you will be like the next day.

Tests like viral markers, MRIs showing lesions or a CPET showing low function or repeat CPET showing low function after the previous days exertion are all good evidence that will stand up in your hearing.

Having other people who witnessed the change in your abilities speak in your behalf can be a powerful tool. Friends, family, neighbors, employers, coworkers, clergy….really, anyone who sees you on a regular basis and witnessed the change. If you were once active in your child's school activities, or did volunteer work and now you are no longer able, have those who saw this happen explain it in a letter. The more the better.

Often Social Security will ask you to go to a doctor of its choosing for a comprehensive medical examination. This happens because they did not get enough information from your records. Before filing its a good idea to gather your own records and make sure the information contained is enough to prove your disability. Have your doctor clarify any vague statements in your records and also request your doctor fill out a medical sourse statement. (see the links) If Social Security still requests you get a consultative examination, it is within your rights for your doctor to do this. In fact its to your benefit. Proving ME/CFS can be tricky and someone seeing you for the first time, for 45 minutes will likely conclude that you seem able to work.