Is it worth the trouble to get a me/cfs diagnosis?

[Florida Guy]

Its very difficult to get the diagnosis from what I've heard. Many doctors still dismiss it as psychological in nature. If you do get a diagnosis, what will it do for you? People who cant work try to get money to live on but its very hard. They seem to start out by attacking the doctors opinion. Since there is at this time no definitive proof someone has it so they usually deny the application for aid.

Going to a doctor let alone all the tests they are going to do is a burden due to the cost as well as the journey to the doctor and finding a sympathetic doctor may be hard and may be a long distance to travel. There may be several visits and someone who is severe may not be able to do it, it may make them worse.

If you are lucky enough to find a doctor who will work with you and give you drugs that may help, it could be worth all the hassle. But if you went far away to get the diagnosis, is it going to help you with your regular doctor? I don't say a word about it when I see a doctor. He may say 'thats interesting' and write in your file that you are a hypochondriac with delusions. That is what we face today

I believe they will find a treatment for cfs within the next 10 years. They are going to spend $1B a year for the next 10 years and I believe they will find at least a treatment if not a cure for most forms of the disease. So hang in there

 

[Thefermiparadox]

Did that pass, the Moonshot bill? I sure hope so! We really need that to pass. Ridiculous CFS funding is 13 million a year. Nothing compared to other diseases.

 

[BrightCandle]

Getting the diagnosis is often hundreds of appointments costing a fortune and then every other doctor you see after will reject the diagnosis and treat you like your mentally ill anyway. The diagnosis opens no doors all it does is close your access to healthcare and mark you as a loon. Until that changes I don't see pursuing diagnosis of value and only medicine can fix itself.

I don't think we are close to a treatment yet, certainly not 10 years if it was that short we would already know the drug and that it likely worked from a phase 1 or phase 2 trial, nothing is that promising yet. We likely haven't even measured the mechanism of the disease, its very unlikely we solve it until a biomarker is accepted and drugs formulated against that. There is no research funding and its declining around the world and most of the Long Covid money has gone into replicating findings and not a lot new has been found so far. The moonshot bill will not be funded now, its dead under a administration that is deconstructing the NIH not adding further to it.