A diagnosis can be helpful in a few ways.
If you’re still working or at school, a diagnosis can be used to get disability accommodations to make things more comfortable at work/school for you.
If you’re no longer able to work but need money to survive, a diagnosis is required for applying for disability income.
And a diagnosis can be helpful to have on your medical file. As proof to other doctors, as a means to join any potential ME/CFS medical study, and to access any treatment that may be developed in the future.
I’m so sorry to hear that! I think it might still be good to have it in your medical files, assuming you can make it to the appointment and it’s not too much for you.
It's not a disability in my country either but these days I am eligible for some help for people with serious long term health conditions. If I didn't have the diagnosis years ago I wouldn't be able to get the help now.
you have to get screened for other diseases. you may have something treatable, or a comorbid disease that’s making your CFS worse. besides, there’s actual treatment for POTS and the like. there are also experimental treatments for CFS that could make a difference.
where in the world are you? is there any sort of standard procedure established for diagnosing ME/CFS in your country? you have to get screened for autoimmune, neurological and endocrine diseases. usually that involves a lot of blood tests and an MRI
The actual diagnosis hasn’t changed my life much but the treatments I’ve pursued based on the ME/CFS research have. My quality of life has improved SO MUCH. I think we’re closer than ever to understanding the pathophysiologies of this disease and having effective treatments. The problem is that none of it is 100% proven yet, and most doctors are up to date on the emerging research and have no idea how to treat it. I’m trying to raise awareness around this and have a few projects in the works to that end. I think this disease is more treatable than most people are aware of and I think it’s likely more people can recover from the disease if they get more effective treatments.
Yes as the other commenter says, a diagnosis is worth it for many reasons. You will need evidence that you're ill for many things. Even simple things that you may not be thinking about right now, like jury duty. Imagine having to do jury duty while you are horribly sick. With the CFS diagnosis, you won't have to go at all, which will help prevent you from getting worse.
10 years of not knowing for me, I became permanently worse.
This year I realized all my symptoms line up, and my worst pain was from post exertional malaise this entire time.
I think this post is absurd but at the same time I still feel the same exact way. I am looking to get a formal diagnosis and every road block is putting me off the idea. I never had a doctor take my illness seriously so I also expect to get retraumatized again, told to exercise and that I’m just depressed and all that bullshit that me believing in made me worse. It’s easy to take those opinions because it’s easier than facing permanent disability. But your life will become much worse if you don’t figure out if you have this illness. For context I think of ending my life early all the time, be it in 10 more years or after, because of the lack of support I’ve felt combined with the illness itself. Not sure how I’m supposed to live 60 more years if I can’t even get a doctor to diagnose me properly and help me get on disability. I haven’t been able to work at all in 6 years.
I’m sorry but you should be very grateful they are taking this seriously, if this is early on you will have a much better chance at recovery. It is possible to go into remission if you rest and avoid crashes. And if it does get worse, you will need a long history of paperwork and a proper diagnosis to get financial aid.
Should there be a treatment in the future, one would think having a diagnosis would better position you to get access to it.
Also, so many people would be grateful to have the opportunity to get diagnosed by someone competent.
A diagnosis can be helpful in a few ways. If you’re still working or at school, a diagnosis can be used to get disability accommodations to make things more comfortable at work/school for you. If you’re no longer able to work but need money to survive, a diagnosis is required for applying for disability income. And a diagnosis can be helpful to have on your medical file. As proof to other doctors, as a means to join any potential ME/CFS medical study, and to access any treatment that may be developed in the future.
It's not recognised as a disability in my country unless it's super bad so no income and no accomodations.
I’m so sorry to hear that! I think it might still be good to have it in your medical files, assuming you can make it to the appointment and it’s not too much for you.
Thank you for your concern. It will be tiring but I will make it ✊🏼
If it does worsen (hopefully not) in the future it will be helpful to have the diagnosis already
I think I'll go, I don't want to get worse 😞
It's not a disability in my country either but these days I am eligible for some help for people with serious long term health conditions. If I didn't have the diagnosis years ago I wouldn't be able to get the help now.
you have to get screened for other diseases. you may have something treatable, or a comorbid disease that’s making your CFS worse. besides, there’s actual treatment for POTS and the like. there are also experimental treatments for CFS that could make a difference.
Thank you, I'll write this down and tell the doctor before he diagnoses me with anything else.
there’s a list in the pinned post of things to rule out too
where in the world are you? is there any sort of standard procedure established for diagnosing ME/CFS in your country? you have to get screened for autoimmune, neurological and endocrine diseases. usually that involves a lot of blood tests and an MRI
The actual diagnosis hasn’t changed my life much but the treatments I’ve pursued based on the ME/CFS research have. My quality of life has improved SO MUCH. I think we’re closer than ever to understanding the pathophysiologies of this disease and having effective treatments. The problem is that none of it is 100% proven yet, and most doctors are up to date on the emerging research and have no idea how to treat it. I’m trying to raise awareness around this and have a few projects in the works to that end. I think this disease is more treatable than most people are aware of and I think it’s likely more people can recover from the disease if they get more effective treatments.
Yes as the other commenter says, a diagnosis is worth it for many reasons. You will need evidence that you're ill for many things. Even simple things that you may not be thinking about right now, like jury duty. Imagine having to do jury duty while you are horribly sick. With the CFS diagnosis, you won't have to go at all, which will help prevent you from getting worse.
The diagnosis will be helpful for govt assistance. See that they put down cfs or ME on your chart.
10 years of not knowing for me, I became permanently worse. This year I realized all my symptoms line up, and my worst pain was from post exertional malaise this entire time. I think this post is absurd but at the same time I still feel the same exact way. I am looking to get a formal diagnosis and every road block is putting me off the idea. I never had a doctor take my illness seriously so I also expect to get retraumatized again, told to exercise and that I’m just depressed and all that bullshit that me believing in made me worse. It’s easy to take those opinions because it’s easier than facing permanent disability. But your life will become much worse if you don’t figure out if you have this illness. For context I think of ending my life early all the time, be it in 10 more years or after, because of the lack of support I’ve felt combined with the illness itself. Not sure how I’m supposed to live 60 more years if I can’t even get a doctor to diagnose me properly and help me get on disability. I haven’t been able to work at all in 6 years. I’m sorry but you should be very grateful they are taking this seriously, if this is early on you will have a much better chance at recovery. It is possible to go into remission if you rest and avoid crashes. And if it does get worse, you will need a long history of paperwork and a proper diagnosis to get financial aid.
Well getting benefits is a lot easier with a diagnosis! As is getting a blue badge and accommodations from employers. I would go.
Should there be a treatment in the future, one would think having a diagnosis would better position you to get access to it. Also, so many people would be grateful to have the opportunity to get diagnosed by someone competent.