knackers323
Senior Member
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Shouldn't it just be a case of running every available test that medicine currently has? It may not find the answer for everyone but I'm sure there are many that are needlessly sick.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Why isn't there a checklist of tests that we should go through one by one until completed? I'd be willing to bet this would help many of us who are needlessly sick.
Yes for some people I agree that the tests needed may not exist yet but I know that for myself, even after 17 years the amount of tests done compared to what is available is only a small fraction. With me it hasn't so much been the cost as it has been battling with Dr's to get them to do the investigations. To me they seem too quick and too willing to say you have cfs and can't be helped. How many times have you heard of people struggling for years to then find someone to do this or that investigation and find the answer to their illness? Why isn't there a checklist of tests that we should go through one by one until completed? I'd be willing to bet this would help many of us who are needlessly sick.
It should be then, and only then that a cfs diagnosis is allowed to be made. How many amongst us can say they have had every test known to man run?
IACFS/ME ME/CFS Primer for Clinical Practitioners has a checklist, starts around page 12.
I seriously hope the medical profession is looking for other diagnosises before labellling anyone as a pwc now.
The web is full of pwcs, or ex pwcs, who are really misdiagnosed lymies, moldies, celiacs, thyroid, etc etc. I still see pwcs who were dx with other illnesses who never regain their health too tho. Knowing
why some recover and some don't would certainly change the way the medical profession works.
My "cfs dx" elimination tests that came back positive were ordered by an integrative doctor who I didn't see until
I'd been sick for about 17 years. I got sucked into thinking seeing traditional doctors was enough.
fwiw, I'm really not sure I qualify for "me/cfs" anymore since most of my symptoms are under control via diet.
Imo, it's impossible to tell since my oi/pots starts the minute I leave a supine position. I typically
feel healthy when supine and I "think" I have enough positive physical dx (permanent damage) to justify my oi.
Tc .. X
Shouldn't it just be a case of running every available test that medicine currently has? It may not find the answer for everyone but I'm sure there are many that are needlessly sick.
Why?
Most diseases do not have specific biomarkers, so why should ME be any different? (This is something that most medical practitioners implicitly know, but don't necessary state).
Most diseases needed much more research (than ME/CFS currently receives) combined with shear luck to find meaningful answers.
Out of interest what diseases were you thinking of when you said they have no specific bio markers?