I hear about a lot of people who get denied disability benefits for ME/CFS - worse, people getting denied over and over again for years. I got approved on my first application and it was because I went about it in a very specific way which I thought I would share to hopefully help you all get approved as well. My benefit is only $700/month which is an insane living wage in the Bay Area considering the cost of housing. But it’s better than nothing and gives me access to Medicare.
The most important thing when filling out the form is to constantly keep in mind to never, I repeat NEVER, talk about mental symptoms. Your mental symptoms are a product of ME/CFS and without ME/CFS you wouldn’t have them so you are not applying for disability benefits for any mental issues, only physical symptoms and problems caused by ME/CFS. Even if this bothers you it doesn’t matter. They don’t understand, the system is biased against us in this way so why play to their biases? Only talk about physical symptoms/problems.
Be super careful in all responses to frame everything in terms of physical symptoms/problems and never mental. Never use the word "feelings". Never talk about "anxiety" or "depression". I went out of my way to show that I was not depressed, but continued to be inspired and wanted more than anything to continue working on my photography but could not because of physical symptoms.
Try to show them what you want to be doing with your life - not drinks and parties - real work, hobbies, careers, education, etc. Show them how badly you want to be a productive member of society but cannot because of physical symptoms/problems.
See a psychologist routinely if you can afford it, before applying for disability. I tried to talk my psychologist into some kind of theory that would explain my symptoms with a mental illness of some sort and he wouldn’t have it. It was clear to him that I had a physical illness.
Get more than one letter. I got 2. One of them was from my psychologist describing how I had a physical illness. The other I can’t remember but it may have been from Andy Kogelnik. One letter from a psychologist saying you have a physical, not mental illness and why they think that, and a second letter from a medical doctor explaining that you have a physical illness and explaining the illness. This combo is pretty powerful and hard to dispute.
So to summarize for the brain fogged:
Make sure that in every question you only refer to physical symptoms/problems and never mental health/issues/feelings.
Communicate clearly throughout the application what you wish you could be doing with your life (something productive), how inspired you still are to do that thing(s) but cannot because of your physical symptoms/problems.
Get more than one letter to accompany your application. I recommend an ME/CFS doctor or doctor you know for certain understands the illness as well as a psychologist who you know understands that you have a physical not mental illness.
I know you have mental issues due to this illness but it’s the Illness that is causing them and given all the prejudice and misunderstandings, don’t give them any ammunition to use against you or write you off.
If you are very careful and follow these guidelines you should get accepted. I hope at least.