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.

 

[kushami]

One possible advantage would be allowing you to participate in research studies, but I realise that is a very small consideration in the bigger picture.

(And do all studies require it? Maybe researchers review the patients who apply to make sure they meet whichever criteria they are using, so proof of diagnosis might not be required.)

 

[linusbert]

i would wait half a year or so to answer the question, because right now in USA is political change happening and the new health secretary said he wants to focus on chronic disease and the new secretary of government efficiency said he will stop gov. wasting money.
so when CFS research funds right now are swamping away, i expect next year that research will pump because money will be used for what its allotted and also the focus of research will shift from whats pleasing pharma to whats helping people.
i also expect that this overdiagnosing of non-existent psychosomatic diseases will massively drop. if you think about it, a psychosomatic disease in practice means nothing more then "we the healthcare system do not care and do not treat you with whatever you have, but we can give you expensive meds to treat your depression or whatever other symptom you have" - and lets be real, probably a lot of us made those supplement industry thousands of dollars revenue, each one. including myself.
but in a functional health care system, actual the healthcare system should pay for those supplements.

 

[Wishful]

I think the answer is that it depends on a lot of factors: your medical system, your financial situation, and what an official diagnosis actually means where you are, and the cost to you (money and stress) of getting that diagnosis.

 

[Blazer95]

i have been constantly doubted by officials despite having a real confirmed diagnosis, so i wouldnt say it really matters at all.

 

[Zebra]

@Florida Guy

I think the decision to pursue, or not pursue, a diagnosis of ME/CFS is highly personal, not to mention multi-factorial.

Let's not pass judgement on one another.

 

[eric_gladiator]

I got my diagnosis by being very firm with the doctors but it was hard both psychologically and physically. I want to think that in the not distant future we will have a treatment due to all the visibility that is being given with the "long covid"

 

[Artemisia]

Some people get disability based on an ME diagnosis.

 

[AdamF]

I was just diagnosed by a sympathetic, open minded doctor after 4 years of normal tests, multiple specialists, etc. To have what in my eyes is a legitimate diagnosis is positive for me in my situation. I am lucky enough to have a few providers who take me seriously and are willing to try a few meds. I've also learned a great deal about chronic illness and self advocacy. Without these factors in my favor, my feelings about the diagnosis would likely be different.

 

[Wishful]

I am lucky enough to have a few providers who take me seriously and are willing to try a few meds.

It's good to have that option, to be able to test things you can't get without a prescription. However, prescription drugs aren't generally successful for treating ME. I can't recall many people reporting major success from prescription drugs. Some do, but overall I don't think the success rate is much higher than from non-prescription treatments, or even random items selected from grocery store shelves.

I did benefit greatly from LDN, so I'm not against trying prescription drugs. My other successes were from grocery stores or supplements. Regarding those really expensive (and possibly risky) drugs, I think they are no more likely to succeed than treatments that are much cheaper and easier to obtain, so you might as well start with the cheap, easy, low-risk options.

Of course, if you have some diagnosed abnormality that is normally prescribed a treatment, you don't need an official ME diagnosis for that.

 

[ruben]

Looking at the title of this thread, I'm wondering how much the benefits in the value of the diagnosis, actually depends on what country you live in.

 

[Dysfunkion]

I wish but the amount of specialists I would need to go through and how strange my neurological/immune/gut problems are with my sensitivities, I would either risk getting thrown into psychiatry (already in therapy but I don't really talk about the health part much besides vaguely because they wouldn't know how to navigate that) or I'd need to with the best results spend so much money that I'd go broke. In America you look at a total over 1000 dollars sometimes if you even need to go for a trip up the road to the ER. For most people with severe health issues besides the appointments if you get into one bad situation then you can kiss every dollar you ever earned goodbye. You're also not gonna get better if you have 0 dollars to do anything for yourself with.

 

[Florida Guy]

I think it does depend on the quality of medical care in your area and whether or not the doctors are familiar with me/cfs or if they are in the group that thinks its psychological only. If, like in my case, the closest doctor that treats it is a hundred or more miles away, it becomes a major problem because there will be many tests and many visits.

The risk that pwcfs take is that if its an average doctor he/she may write something in your file that you are a nut. Doctors warn each other against bad patients, those who have sued doctors or caused a problem and drug seeking patients. So if its an average doctor, they will not only not help you, they will warn other doctors that you are faking illness. Thats not what I want my doc to read just before my appointment. I think you are marked for life once they put that on the record