Is ME a more curable illness than other serious conditions?

[alex3619]

Which reminds me that Ron Davis has been working on a diagnostic test that, in the small numbers tested, has been accurate--in that there was something testable that was consistent in all the ME/CFS patients tested and "not there" in the controls.

Yes, but even Ron Davis is not sure what it means yet. That does not mean we cannot use it, it would not be the first time that a not fully understood finding was proven to be very useful. Any replicable marker is likely to be useful, particularly if its unique to the group being studied. This is one of the possible biomarker investigations I have hopes for.

 

[halcyon]

Which reminds me that Ron Davis has been working on a diagnostic test that, in the small numbers tested, has been accurate--in that there was something testable that was consistent in all the ME/CFS patients tested and "not there" in the controls.

It has only been tested against healthy controls last I heard, so it's not accurate as a test for ME or CFS yet.

 

[alex3619]

Once upon a time we had wasting disease, then cancer, then treatments for cancer, then different types of cancer, then treatments for those, but now the focus is on genetic and other biomarkers, with treatments specific for those. CFS will most likely go the same way. ME might or might not go the same way depending on what is discovered.

 

[heapsreal]

I have a concern on splitting off subgroups. I do think this is great for those who get treatment, but there is a real danger that everyone still with untreated generic CFS or even generic ME who are left behind might be subject to even worse stigma. This is because the "real" ME patients are treated and move on, so the others "must not" be "real" patients. This is typical human thinking, and bogus, but its far too common, especially with politicians who are looking for quick fixes.

Without splitting off subgroups, that could mean really not moving forward from where we are now.

I would hope that it would encourage further research to find whats wrong with those remaining. Especially if we can show they missed a large treatable group labelled cfs for many decades.

 

[silky]

There's also the possibility that even amongst various groups or symtoms there's a common metabolic adnormality that can be treated with an existing drug

 

[heapsreal]

There's also the possibility that even amongst various groups or symtoms there's a common metabolic adnormality that can be treated with an existing drug

Maybe, but alot of drugs have been used by cfsers as well as supplements.

 

[silky]

Maybe, but alot of drugs have been used by cfsers as well as supplements.

Yes true but what about all the odd ball drugs hiding out

I'm thinking of a particular African sleeping sickness remedy that works on the purinergic signal

 

[silky]

In fact I'm thinking about getting some IV saline, taking 20g of D-ribose, and flying to Cape Town so I can mysteriously contract said disease...

Then it's "yes Mr Doctor I feel dreadfully tired all the time. And I think my purinergic signaling mechanism is off. If only there was a hundred year old drug around somewhere you could give me. But wait! Make sure it's a low dose, I'm very sensitive"

 

[heapsreal]

Yes true but what about all the odd ball drugs hiding out

I'm thinking of a particular African sleeping sickness remedy that works on the purinergic signal

I wouldnt mind some drugs i know we have. Short list would be raltegravir/isentress, interferon, ampligen, ivig, cidofovir. Growth hormone, deca durabolin, anesthetized for a couple days when i want. Thats all to start with.

 

[silky]

I wouldnt mind some drugs i know we have. Short list would be raltegravir/isentress, interferon, ampligen, ivig, cidofovir. Growth hormone, deca durabolin, anesthetized for a couple days when i want. Thats all to start with.

Woah woah whoa slow down homie

What is deca durbolin?

 

[ebethc]

Can only report from my own experience:
At least I now found out what may cure me:
fixing mitochondria
raising NO
address pryuvate dehydrogenase
raising BH4

How do you fix those things?

I felt great after taking high doses of arginine, then had the worst crash... I think that NO plays a def role, and I know that there are "good" NO and "bad" NO but I don't know how to influence one w/o the other

 

[alex3619]

Without splitting off subgroups, that could mean really not moving forward from where we are now.

I would hope that it would encourage further research to find whats wrong with those remaining. Especially if we can show they missed a large treatable group labelled cfs for many decades.

I agree we need to do this. Its just that we need to be thinking about the social and political consequences. Its great for those who have treatments, and it will be up to advocacy to point out that if some are helped then others can be helped with even more research. If we do not then denialists will start targeting those who are not cured.

 

[alex3619]

There's also the possibility that even amongst various groups or symtoms there's a common metabolic adnormality that can be treated with an existing drug

Maybe, but alot of drugs have been used by cfsers as well as supplements.

Yes true but what about all the odd ball drugs hiding out

Most drugs never make it to market. I think Ron Davis might have access to many of those if he approached drug companies. Alternatively, drug companies might take a look at all the drugs they never took to market but were relatively safe, once they know how to test for efficacy.

One of the great benefits we have of advancing methods is we can develop test beds, or means to measure large numbers of drugs by their effect on patient blood etc. Ron Davis hopes to test every known and approved drug in test beds. That would be very helpful. However many unapproved drugs exist. They are probably in the vast majority. It would be great if we could get those tested too, in test beds initially.

 

[alex3619]

Ampligen is a drug that probably will help many, but probably will fail in a test bed. There are drugs that require a relatively functional immune system to have an impact, and I wonder if there is enough of that in a blood sample for this drug to work.

 

[heapsreal]

Woah woah whoa slow down homie

What is deca durbolin?

Woah woah whoa slow down homie

What is deca durbolin?

Ive had a list in my head for a few years lol.

Deca durabolin is an anabolic steroid they were using in hiv patients to reverse the muscle wasting effects of the illness. What they found was that it actually increased their immune function, something they werent expecting as they were only aiming to reduce the catabolic effects of hiv. Several studies on it. I cant recall his name but there was a dr who wrote a book on how to use these substances in hiv, very different to how athletes use them.

So with cfs the improvements in immune function are the main effects we are looking for but tgere are other helpful aspects. Because it can help reverse catabolic effects of diseases and i believe even in somewhat active cfsers there is a loss of muscle mass even if pre cfs weight is the same and many bedridden cfsers theres definite muscle wasting. With catabolic effects coexists increased oxidation and inflammation that occurs that deca coukd help with. It also has very good pain relieving and healing qualities in muscle and joint/cartilage injuries as well as increasing mineral bone density. Another effects is its ability to increase red blood cells numbers which help increase endurance and its commonly used in certain anemias, this could also benefit those with pots/oi symptoms.

Theres other benefits but thats off the top of my head. Its one of the safest steroids available but probably very hard to get prescribed. Its quite safe for women but doses need to be reduced.

If you google it with hiv im sure you will find more information and many studies.

Id prioritize other treatments first though that have a more direct effect on infections and immune system. But it could be a higher priority drug for anemias and pots/oi and severe muscle wasting.

 

[Gingergrrl]

Agree. I think if a cause of ME is found, say its entero virus X and theres a drug treatment for this. The condition ME will no longer exist and people will be diagnosed with EV X infection. Its very possible that cfs will continue for those conditions that are negative to EV X even though they may have similar symptoms.

This is what I was thinking as well @heapsreal except that you explained it a lot better than I did! If "true ME" turns out to be entero virus X (vs. an autoimmune disease or any number of scenarios) than in my mind, we have at least two separate illnesses and treatments. And I suspect there are even more if you add in people with Lyme, mold, MCAS, etc, or other triggers/treatments.

This is I think a highly likely scenario. Subgroups might be split off as tests, treatments and cures are developed, until only those with very rare diseases remain. Each subgroup will no longer have a CFS diagnosis. Even ME diagnoses might be subject to this and ME might not be a clinical entity in its own right.

This is my thinking as well but you also explained it much better than I did!

I have a concern on splitting off subgroups. I do think this is great for those who get treatment, but there is a real danger that everyone still with untreated generic CFS or even generic ME who are left behind might be subject to even worse stigma. This is because the "real" ME patients are treated and move on, so the others "must not" be "real" patients. This is typical human thinking, and bogus, but its far too common, especially with politicians who are looking for quick fixes.

Agreed and I would not want only those with "true ME" to have access to treatments, vs. everyone to have the same access to diagnostics and treatments, regardless which illness or subgroup they ultimately end up having.

It has only been tested against healthy controls last I heard, so it's not accurate as a test for ME or CFS yet.

I did not realize that and thought that Dr. Davis had tested his theory ME/CFS patients and healthy controls?

 

[halcyon]

I did not realize that and thought that Dr. Davis had tested his theory ME/CFS patients and healthy controls?

What I mean is that they haven't tested people with other diseases to see if the test is specific for only ME.

 

[heapsreal]

This is what I was thinking as well @heapsreal except that you explained it a lot better than I did! If "true ME" turns out to be entero virus X (vs. an autoimmune disease or any number of scenarios) than in my mind, we have at least two separate illnesses and treatments. And I suspect there are even more if you add in people with Lyme, mold, MCAS, etc, or other triggers/treatments.

Its possible the actual cause EV X say suppresses the immune and can cause other issue maybe also autoimmune and be red herrings. Subgroup thing is limitless and i think they really have to treat those in this messed up illness individually.

But not have you lay on a lounge and ask you questions about your childhood lol

 

[Gingergrrl]

What I mean is that they haven't tested people with other diseases to see if the test is specific for only ME.

Sorry, I misunderstood, and agree that they need to test people with other diseases in addition to healthy controls (and assume that will be happening at some point)?

Subgroup thing is limitless and i think they really have to treat those in this messed up illness individually.

I agree with this too and I think in the end, each person's treatment will be individual since some respond to anti-virals, some to antibiotics, some to autoimmune treatments, mast cell meds, POTS/OI meds, and endless other things and combinations of them. When I joined PR in mid 2014, I thought all of us had the identical illness and now I can't believe how naive I was!

 

[silky]

Here's a question? Do any of these other major diseases besides maaaaybe MS have these periods of remission? It doesn't seem that way

Another clue that the "damage" is functional