Shouldn't the answer to our illness be easy to find?

[knackers323]

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.

 

[wdb]

But isn't ME/CFS a wastebasket diagnosis, that is it should only be given when anything else that might explain the symptoms has been tested for and ruled out.

 

[globalpilot]

Well, after 12 years I haven't been tested for everything.
There are cost constraints.

 

[jeffrez]

The proper tests don't exist yet, because we don't know the mechanism/s or have reliable biomarkers. The current medical paradigms might even be (and actually probably are) inadequate to detect, diagnose or measure ME/CFS. Put another way, medical science is still too primitive at this point to be able to understand ME/CFS.

 

[knackers323]

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?

 

[wdb]

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.

IACFS/ME ME/CFS Primer for Clinical Practitioners has a checklist, starts around page 12.

 

[caledonia]

In a perfect world with unlimited funds, you could run every test known and come up with many abnormalities.
For normal medical testing, my only abnormal tests were EBV and thyroid antibodies. Normally they just test TSH and say you're fine.

However, once I got into naturopathic/holistic/alternative medicine, all kinds of tests showed up grossly abnormal. My adrenals were flatlined, and I have horrible methylation problems, both by SNPs and functionally. My gut has many abnormalities - malabsorption, dysbiosis, and yeast. I also have elevated levels of heavy metals.

 

[SickOfSickness]

What caledonia said. Most docs will order bloodwork a couple times, suggest a psychiatrist (since almost all of us have some signs of depression or anxiety), and not much else. Most can't believe we have so many symptoms and so badly.

 

[globalpilot]

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?

Actually, there is someone on this forum who put together an excellent list of tests. I think it may have been Hip.
I agree, in addtion to cost it has been a battle with the doctors with me too. I have almost had to beg for everything I've accomplished.

 

[xchocoholic]

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

 

[knackers323]

IACFS/ME ME/CFS Primer for Clinical Practitioners has a checklist, starts around page 12.

Hi wdb, thanks for that. It is a good start but far from everything. And even amongst that list I haven't been able to get the so called medical professionals to do them all.

 

[Allyson]

Knackers you might want ot get tested for POTS - that is not too hard to do
you can also check out for yourself if you have EDS at this link - one to rule out at least
http://forum.notcrazy.net/index.php?topic=9571.0

I wish it were that easy


ALl

 

[taniaaust1]

One will never be able to rule everything completely out well. Take things like lyme and systemic mastocytosis (which at times is only picked up by a bone marrow biopsy), celiac disease too can be hard to diagnose and sometimes a bowel biopsy is needed done but even then it can still be missed. There are lots of things even with tests could be missed.

I think that is why not only do we need to try to focus on ruling out things but also need to focus on doing the tests in which the common ME abnormalities show to see if we do have some of those too to help vertify that ME is probably right even if one meets criteria. I wasnt happy to think that I probably have ME until I found ME abnormalities on test results (and thou one can have them in other things too, it did help put my mind to rest some that a ME diagnoses would probably be on the right track).

 

[knackers323]

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

That's what I mean. Maybe the reason why some get better and some don't is because some find the reason why THEY are sick and some don't. Maybe we are all misdiagnosed with cfs. Maybe there is no such illness as cfs but we all remain unwell because through insufficient testing we haven't found the answer to our own individual problem? Maybe there is no one size fits all answer, maybe there is.

 

[knackers323]

Thanks Ali

 

[xchocoholic]

I see no reason pwcs can't be tested for what has been demonstrated to be
the normal misdiagnoses. Testing for gluten sensitivity including celiac can
most of the time be determined via a strict gf diet. There are exceptions to this
so testing for gluten antibodies via stool can help too. Some celiacs, called
silent celiac don't know they're reacting
to gluten.

Unravelling cfs is the approach taken by integrati
ve doctors. From my experience
they follow the same or very similar route as DAN professionals do. btw there aren't
any me or cfs tests to prove our dx. All studies are invalid since no
one has bothered to eliminate the obvious misdiagnosed pwcs for these studies.

 

[Snow Leopard]

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.

 

[knackers323]

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.

That is exactly my point. Maybe there are no bio markers for cfs because there is no such thing as cfs and we are all misdiagnosed. Almost every person that has been diagnosed as cfs and then gotten well was because they found something that had previously been overlooked. I know myself that there are many tests I read about on this site alone that I haven't had done but every doc I've seen in 17 years was content to tell me I have cfs and nothing can be done.

It may just be that many people remain unwell through Dr laziness and ineptness. If the answer doesn't fall in there lap, then for many it all seems too hard.

I hear that there is a Dr in Oz finding Lyme disease in 97% of people previously diagnosed with cfs. So maybe they have all needlessly been sick.

Out of interest what diseases were you thinking of when you said they have no specific bio markers?

Thanks

 

[ukxmrv]

Knackers, ME patients argued against the creation of CFS because it was felt that it would become a wastebasket diagnosis. Also it was felt that as time went on new tests wouldn't be added and patients wouldn't even get the tests that the CDC included. You probably know about the ME docs who walked out of the CFS CDC meeting when it was invented.

Lyme disease was an exclusion for CFS in the CDC criteria and we can all see how well that idea went...

UK studies show large numbers of patients who are found to be misdiagnosed when they reach a clinic. Yet that doesn't stop UK doctors at other clinics from not even bothering to examine patients before a Dx.

The Dr in Oz finding Lyme disease in 97% of patients may not be using a test recognised elsewhere as 100% reliable, or there is a huge untested Lyme Epidemic in Australia or it's "just" another co-factor and they will have lots of other pathogens as well.

Hardly anyone cares enough about CFS patients to ensure that they get a good range of tests and a diagnosis using modern, up to date methods. No Western Government or Health Department has tackled this problem fairly. If "CFS" didn't exist many would be in the psychiatric clinic instead being told that they were mentally ill, and yet no tests would ever be run on them.

 

[Snow Leopard]

Out of interest what diseases were you thinking of when you said they have no specific bio markers?

Pretty much every disease I know of, from cancer to MS. The sensitivity/specificity is not there for most tests you can thing of, missed and misdiagnosis is a lot more common than people like to accept.

Some diseases there are tests that are highly suggestive (eg insulin and blood sugar levels for diabetes), but even then it requires some thought before diagnosis. Medicine is still very much based around old fashioned judgement of the practitioner and not of magical diagnostic tests.