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Why is CFS so difficult to detect with standard instrumentation ?

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
There are tens of thousands of physiological processes happening at any given moment in the human body. Your doctor has the ability at this point to order tests to measure maybe 50 or so of these processes. A specialist another 50 or so more (I'm almost certainly understating this, but not by much). That leaves, say, 49,900 potentially patho-physiological processes that cannot be measured at this time, including whatever it is that is making us all so ill. It's like looking at a building-sized mural through a pin hole. What a mind-blowing act of hubris, then, for a doctor to say that, after looking through the pin hole, he or she has seen the whole picture. But that is precisely what they are doing when they get your lab results back and say nothing is wrong with you because they didn't see anything when they looked through the pinhole (i.e. the 50 or so things they actually can measure).
 

unto

Senior Member
Messages
172
This discrepancy between the severity of symptoms and the lack of finding anything amiss in normal blood or tissue tests is a characteristic of ME/CFS, and of a number of other diseases, which are collectively called functional disorders. This contrasts to diseases labelled structural disorders, in which there are clear visually or physically observable abnormalities (eg, a build up of plaque in the brain of Alzheimer's patients).

Patients understandably don't like the name functional disorder, because some psychiatrists and psychologists have exploited the lack of finding anything structurally wrong in the blood or tissues, and come up with their lazy and crackpot theories that functional disorders must be psychologically caused, and "all in the mind". Which is complete nonsense, but it keeps certain none-too-bright shrinks in employment.


However, in terms of understanding causes, the name "functional disorder' is a good one, because it indicates exactly where the etiology of the disease lies: the cause lies in problems with the functioning of the body, rather that in problems with the structure of the body. And that's why in functional disorders, the cause is not detected by normal visual or physical examination, because there is not much wrong structurally.

For example, if you consider multiple sclerosis, this can be classed as a structural disorder, because under a microscope you can see the lesions in myelin sheath of the nerves, and it is then immediately apparently why the nerves cannot function properly in MS.



But you generally don't find any structural pathologies in ME/CFS (although some severe cases do sometimes show a few brain lesions). So it is assumed that the cause of ME/CFS must be functional, meaning there must be problems with the way that the body operates.


One excellent candidate for the functional cause of ME/CFS is autoimmune attack. If your immune system is creating antibodies that attack and disrupt the micro-machinery inside your cells, and antibodies which attack and disrupt receptors on the cells which receive signals, you will generally not see any of that going on under the microscope, and nothing will look visually and structurally wrong, yet such an autoimmune attack may be profoundly altering the functioning of the body, and thereby causing severe disease.



I do not believe that ME disease is "functional", it autoimmune but weak infection that can cause significant damage to the tissues, just that this kind of damage still can not be detected with current diagnostic imaging ...... of course if you he knew the germ responsible for inflammations of these would be a no-brainer to have diagnostic tests on the blood.
@Hipin support of what just said I can bring my experience and that of my dog, I do after an accident at the dock I had a steadily worsening lower and upper abdomen (with swelling pain and pressure in the chest)my dog before dying of widespread mild endocarditis and peritonitis has undergone many tests: Abdominal ultrasound, cardiac echo, blood tests, visits etc ..when I asked if he could have a veterinary chronic peritonitis post sterilizing them said to me that too many years had passed intervention (5 years)and that it should have significant symptoms such as high fever, pain on palpation and ultrasonography to see the thickening of the peritoneum;only after the autopsy were detected peritonitis and endocarditis.

I think that the germ (cause of ME) circulates in the blood vessels and during surgery and not only can propagate in ......... tissues and cause inflammation mild but persistent undetectable by MRI and CT scans, how it can be one that affects the throat of ME sufferers ........ mild inflammation ready to reappear at every cold ......
 

unto

Senior Member
Messages
172
sorry mistranslation, I do not think all'auimmunità ....;
I think the germ that causes the ME can cause inflammation of the tissues ...
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Many of us here, who have been lucky to see specialist M.E Drs in Europe and in the States DO have abnormalities that can be detected and shown in blood tests and other tests such as exercise testing.

Most Drs know nothing about the abnormalities they might find in an ME patient so don't look. Many patients are found to have immune system problems, multiple chronic infections, reactivated viruses and mitochondrial issues.

My Dr also found EDS,MCAS and a MVP - all of which was missed, but has now been verified by my countries own health system. Unsurprisingly they didn't even look. Oh and I also have low level Antinuclear antibodies - this also isn't uncommon in long timers.
 

Arius

Senior Member
I agree with lansbergen, Michelle, and justy. I live in Canada, and I've pushed my doctors to order tests that would show gut dysbiosis, increased intestinal permeability (leaky gut), and mitochondrial dysfunction. The tests exist, but the doctors actually CAN'T order them. I'm assuming the reason is that the government won't cover the costs of these tests. The doctors just say they can't do it, the tests aren't available, etc.

The only thing that standard testing revealed was that my white blood cell count and platelets were low. Standard sign of poor immune functioning. A specialist tried to argue that this was probably my baseline and there was nothing to be done about it. I did also manage to get sent to some CFS/ME specialists in Toronto who found out that my EBV (mono) was reactivated.

Other than that, I've had to pay about $1000 out of pocket so far to find out that yup I have a dysbiosis of sulphate-reducing bacteria, low sIgA, a parasitic infection, and something wrong with my mitochondria. I expect I will have to pay a lot more before I am done. I've been ill for more than two years and only recently got some money that I can use to find out what is wrong with me.

Canada in particular has a serious problem with Lyme illiteracy. Lyme disease has only recently become a problem here thanks to climate change, so our doctors don't know anything about it. I was given an ELISA test, which is basically garbage, and told that this was an excellent test, and not to worry because I didn't see a bull's-eye rash on myself anywhere... even though maybe half of all bites don't even show a rash, and of the ones that do, only a small fraction are bull's-eye rashes. I asked the doctor for a Western Blot test, and she refused. So I could actually have chronic Lyme disease and not know it. If I want to find out for sure, I have to order thousands of dollars worth of tests from the United States.

It seems that governments have done the math and decided that the cost of accurately diagnosing and treating people with ME/CFS is higher than the cost of just having us drop out of the economy and depend on social assistance. The only country I am aware of that treats this disease as a serious threat to its economy is Japan, where a lot of the best research is now being done.

Basically, we're on our own. Together.

Here are some resources that have helped me significantly reduce some of my symptoms:

http://drmyhill.co.uk/
 
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Messages
47
They are actually scared to do the math. Current action and policies- avoid at all cost or even avoid considering there is a problem.
The insurance companies in America started a lot of the problem.
That's spread.
It probably costs more for the benefit system than if these people were working.
There is another theory they want people not working so they can control them.
In America they don't want people living in the out back they want them in towns and cities. So they can keep an eye on them. In 2000 the American military deliberately sprayed Tick previously microwave then dipped in Lyme disease.
In the UK Porton Down have been up to no good. Wiltshire was sprayed with Anthrax in the 60's. The cold research Cen Porton Down.
Lyme may also escaped from
Porton Down the strain that's been used in tests C6 OSP. They have not found too many of that on its own.

The next generation thinks it will have its fiddle factor. Then it's covered by the official secrets act.

My mind they could of sprayed troops with stuff it's coming through the genes.
As the Mod did experiments with them
Christmas Island they were told to just turn their back on atomic bombs.

A genation or more they have been ill themselves and passed on genetic damage to their children. They have tried to sue the Mod. The Mod have said it's too late. Which is what I fear migh happen with the Lyme.