th1/th2 cytokine test

[Jonathan Edwards]

As a patiënt i don't believe in (chronic) lyme as a cause for (90%) ME/CFS. The LTT test is not reliable at all. Though the test is interesting. Doctors would ackowledge (chronic) lyme if the tests are validated. Doctors don't care about goverments and insurance companies, they want to know the truth. Some patiënts believe in a conspiracy theory, i don't. ME/CFS is a difficult disease for scientists. I think a real breakthrough will come from spinalfluid, PETscan and MRI studies not from immunological. This disease is in the brain and (autonomic)nervoussystem or small veins. Bloodflowdisfunction is the key problem in this this disease.

Neatly put, Gijs.

 

[heapsreal]

I guess you would be in a better position to judge that than I, Heaps. I guess Fleming had no incentive to discover penicillin and I had no incentive to develop treatments for RA. Figures. We must have been short of lateral thinking.

Ask the poor Britts who have had ME for 20 plus years and told to exercise.

 

[minkeygirl]

Money = Incentive

 

[minkeygirl]

Ego = incentive

 

[Mary]

Ask the poor Britts who have had ME for 20 plus years and told to exercise.

Americans too! Actually, worldwide ME patients have been told to exercise or it's all in your head, etc. etc. ad nauseum, for decades. There IS politics in medicine and for many doctors (at least in the U.S.) it was career suicide to devote time and energy to a "waste basket" disease like CFS/ME. Read Osler's Web. The prestigious Mayo Clinic used to have cartoons mocking CFS patients posted where they thought patients wouldn't see them. Money earmarked for CFS research was diverted to other illnesses considered more important by the CDC. The history of CFS research has been, and still is to large extent, a travesty = almost no money allocated to research for one of the most debilitating illnesses in the world. We all know this, it's not news.

 

[Jonathan Edwards]

And it is interesting that the only well designed double blind randomised trial for treatment in ME currently in progress is being funded by a government as part of socialised medicine. The fact that the country concerned spends almost 3 times as much per person as the UK might be relevant but it's still socialised medicine.

 

[minkeygirl]

If ME killed us, outright killed us like AIDS, researchers would be falling all over themselves trying to be the first ones to find a cause and treatment/cure. Remember And the Band Played On

Because we don't outright die from this, (I'm not talking about cancer or suicide) then there's no real money to be made, no glory, no one cares.

One government funded study is nothing in the scheme of things when you look at all the other diseases that have heaps of money poured into them. I don't care who funds it. Just do it.

Why does everyone in the UK Go elsewhere
For treatment? It's known that the UK has pretty much zero help for most people.

I'll be long dead before there is anything that is really meaningful.

 

[acer2000]

The LTT tests are interesting. IIRC the TB blood test called Quantiferon Gold uses LTT as its method. As far as TH1/TH2 goes I have no idea. My cytokines have been all over the place. I do wonder about the reliability of testing though. Perhaps the only consistently elevated cytokine I have had is IL-8.

 

[Mary]

And it is interesting that the only well designed double blind randomised trial for treatment in ME currently in progress is being funded by a government as part of socialised medicine. The fact that the country concerned spends almost 3 times as much per person as the UK might be relevant but it's still socialised medicine.

That is interesting and I'm sure no coincidence. Medical research in the U.S. is driven by profit. It's sort of ironic - so little real information is out there re CFS/ME because this illness has, in effect, been blacklisted, drug companies aren't interested in us, but if they saw a potential for making gazillions of dollars, they'd be all over it. But in any event I would much prefer studies re nutrition and causes, not drugs. No one ever got sick from a pharmaceutical drug deficiency.

 

[SwanRonson]

Doctors don't care about goverments and insurance companies, they want to know the truth.

Insurance is all my doctors care about. It's their full time job. They moonlight as physicians.

The physicians I've seen during my illness are not scientists. They are professionals. Getting paid comes before truth on the priority list. The physicians that care about truth first are usually not accessible.

Maybe things are different in other places, or I'm just unlucky. But I don't think so.

That being said, when the research physicians get involved in treatment things can go horribly wrong also. So I suspect there is not a real answer to the dilemma.

The only real blame to go around is toward those first line physicians that never attempt to reach out and make connections to help patients with symptoms they can't explain. Those are the only ones I have a problem with.