Realistically there is no cure?

[Sam Carter]

That's a bit of a tease!

Wouldn't happen to involve mitochondrial microtubules?

If I remember correctly GWI researcher Beatrice Golomb was interested in the effects of organophosphates etc on microtubules and how this effects mitochondrial energy production (in neurons). I happened to mention a thread on PR where counterintuitively, some people seemed to improve while (co-incidentally) using a vermicide drug which should work by interfering with microtubule function but perhaps in low doses may have the opposite effect (sorry I can't recall the details at the mo).

PS - Sorry for the de-rail.

Discovery of quantum vibrations in 'microtubules' inside brain neurons supports controversial theory of consciousness

Summary:

A review and update of a controversial 20-year-old theory of consciousness claims that consciousness derives from deeper level, finer scale activities inside brain neurons. The recent discovery of quantum vibrations in "microtubules" inside brain neurons corroborates this theory, according to review authors. They suggest that EEG rhythms (brain waves) also derive from deeper level microtubule vibrations, and that from a practical standpoint, treating brain microtubule vibrations could benefit a host of mental, neurological, and cognitive conditions.

 

[redaxe]

I think the original post was spot on.

If there was any reasonably effective cure that worked for most of the people who tried it, things would be a lot different here.

Well that may be on its way

I can think of 3 drugs that may revolutionize treatment

1) Rituximab - already in trial
2) Brincidofovir - More effective, safer and broader spectrum than the current antivirals. Expected to be available within 1-2 years from what I've heard. The support for this drug has come from the huge demand for a antiviral for transplant recipients so the demand is there to get this drug available asap.

3) DRACO - This if it is approved for use in human clinical trials could be the equivalent of penicillin for viruses and completely revolutionize how viral infections are treated. It's a broad spectrum antiviral that works by specifically targeting viral infected cells and inducing apoptosis. If persistent viral infections can be identified as a cause of CFS/ME than a targeted therapy such as this may well be the equivalent of a miracle cure. Still some years off but I think now that we have prestigious researchers and institutes researching CFS/ME we have a good chance of trialling these drugs for us once more r&d work has been done.

 

[Marco]

@Sam Carter

Interesting theory. Not what I had in mind but interesting all the same.

 

[anciendaze]

I think we would all feel that life was tolerable if we were no more impaired than HIV+ patients on ARVs.

 

[msf]

I think the idea that 'there is no cure' is a dangerous one, if people do not pay attention to the 'for most patients' part. If we agree that there must be a cause of ME, I think there must be a cure, since this is what the history of medicine has taught us. Whether that cure has been invented yet depends on what the cause is.

I think the reason that neither antivirals nor Rituximab seem to lead to lasting complete remission of symptoms suggests that this is because they are only treating an aspect of the disease - when we understand the disease fully these treatments may be part of the cure, or at least part of the treatment that holds the condition in check.

 

[lansbergen]

I think there must be a cure, since this is what the history of medicine has taught us.

Depends on definition of cure.

Treating symptoms is not cure.

 

[msf]

Those two statements contradict each other. I was using cure to mean cure, Would you put any money on a particular condition not being cured/put into remission in the next 50 years? I wouldn't.

 

[duncan]

Stupidity? Greed?

 

[adreno]

Stupidity? Greed?

There is no cure for that, either.

 

[lansbergen]

Those two statements contradict each other. I was using cure to mean cure, Would you put any money on a particular condition not being cured/put into remission in the next 50 years? I wouldn't.

I doubt I will get 120 years old. I will not bet on what might happen after I am dead.

 

[Marky90]

I think the idea that 'there is no cure' is a dangerous one, if people do not pay attention to the 'for most patients' part. If we agree that there must be a cause of ME, I think there must be a cure, since this is what the history of medicine has taught us. Whether that cure has been invented yet depends on what the cause is.

I think the reason that neither antivirals nor Rituximab seem to lead to lasting complete remission of symptoms suggests that this is because they are only treating an aspect of the disease - when we understand the disease fully these treatments may be part of the cure, or at least part of the treatment that holds the condition in check.

Spot on, ofc there is a cure! If the cure contains of one treatment, or several.. Remains to be eludicated.

Would like to add that there is cases of complete remission with Rituximab, but it might indeed just be a remission.

The work at Haukeland strongly suggests we are on the right track for a subset. Finally we have a place to start, where 2/3 gets significantly better! This hasnt be the case for decades. While its very hard to live with this illness, at least we have well-founded HOPE.

While i symphatize with the scepticism of some forum members who has been ill for a long time, and gone through a lot of crushed expectations, you have to admit that there never has been results like we are seeing now.

Realistically, there will be a cure.

 

[alex3619]

I think the idea that 'there is no cure' is a dangerous one, if people do not pay attention to the 'for most patients' part. If we agree that there must be a cause of ME, I think there must be a cure, since this is what the history of medicine has taught us. Whether that cure has been invented yet depends on what the cause is.

This thread is not about no cure ever, but about there being no proven cure now. ZERO. There are several promising treatments in the pipeline, and of those only Rituximab has good evidence it might be curative.

 

[msf]

I think everyone agrees on that. I was just pointing out that if we discover what the cause(s) of ME is, there may already be a curative treatment available.

 

[worldbackwards]

No cure? No cure? But why would my "support" group send me such a thing as this? Form an orderly cue and we'll be right as rain by the end of the "retreat"...

This relaxing day retreat will awaken your feminine wisdom and your body’s natural ability to heal.

A pocket of peace away from the hubbub of daily life, we'll gather together as a circle of sisters, to explore tools and techniques to support your recovery from chronic health challenges, including gentle, restorative Yoga and Emotional Freedom Technique.

In this two day break away from it all, we'll dive deep into the tools and practices that helped us recover from chronic illness, nestled inside the supportive, nurturing atmosphere of a circle of sisters.

As women with chronic illness, we sometimes feel that we have to do it all alone. On this weekend, we immerse ourselves in the healing balm of sisterhood, filling our wells, activating the healing keys within our female body and giving a powerful, lasting boost to our recovery journeys.

We use tools from the practices that have most supported us on our personal healing journeys including Emotional Freedom Technique, Neuro-Linguistic Programming, Guided Meditation, and Gentle, Restorative Yoga.

Obviously we've all got wandering wombs here, so the "women's retreat" thing isn't going to be a problem - I've no doubt that, even if there were such a thing as a male "Chronic Fatigue" sufferer (which of course I couldn't possibly be), they'd be let in as an honorary woman in view of the extreme "sensitivity" that would be required for them to have become so distanced from their natural healing power. Surely over the course of a weekend, we can find out "what you need to learn to become more fully yourself, that your presence may shine in the world" and free ourselves forever.

Apparently I pay them to tell me about this shit.

 

[SOC]

No cure? No cure? But why would my "support" group send me such a thing as this. Form an orderly cue and we'll be right as rain by the end of the "retreat"...


Obviously we've all got wandering wombs here, so the "women's retreat" thing isn't going to be a problem - I've no doubt that, even if there were such a thing as a male "Chronic Fatigue" suffer (which of course I couldn't possibly be), they'd be let in as an honorary woman in view of the extreme "sensitivity" that would be required for them to have become so distanced from their natural healing power. Surely over the course of a weekend, we can find out "what you need to learn to become more fully yourself, that your presence may shine in the world" and free ourselves forever.

Apparently I pay them to tell me about this shit.

I guess life is a little hard for these "sisters" and the poor things are a bit tired. May they enjoy their retreat and shared stories of "healing journeys".

God, I can't wait until we have a solid biomarker and can separate the neuroimmune illness ME/CFS/SEID from everything else that makes people chronically fatigued (like modern life).

 

[MikeJackmin]

Just for the record, I would be perfectly happy with a decent treatment, even if there was never a cure.

We don't really have a cure for diabetes, either.

 

[Marky90]

Just for the record, I would be perfectly happy with a decent treatment, even if there was never a cure.

We don't really have a cure for diabetes, either.

Just something for the concentration would do wonders! To be able to comfortably read books e.g., then one could study or even work! I can live the rest of my life without running a marathon .. To feel comfortable walking around..

 

[SOC]

Just something for the concentration would do wonders! To be able to comfortably read books e.g., then one could study or even work! I can live the rest of my life without running a marathon .. To feel comfortable walking around..

I'm with you on this one. I've had a lot of improvement in cognitive function with Valcyte, OI treatments, and LDN so now I can read a book (although I still find audiobooks much easier), but I don't have enough concentration, attention, and mental energy to study. If I could study, take some classes, learn new things, work at a challenging job, life would be a lot more satisfying. I could live without competitive sports, but living without my intellect is what's really painful.

 

[catly]

Just to put things into perspective, the US House Committee working on the 21st century cures initiative keeps quoting something like there are 7000 known diseases and we only have cures for 500. So we are not alone. The good news is they got approval, or are close to it , to infuse an additional 10 billion dollars to the NIH for 5 years starting 2016, that would be on top of their 30 billion per year budget ( don't quote me in that number- I could be remembering wrong)

They are also working on shortening the timeframe for new drug and device development.

It would be nice if we could tap into some of that funding. I would be happy with a treatment that controls MECFS symptoms allows me to function normally.

 

[waiting]

Rituximab is the only potential cure on the horizon, and its still needs the phase 3 trial to be completed. Only then will we have the data to talk of cure versus remission, and non response rates, and so on. Currently it looks like nearly a third of patients are non responders.

Even Ampligen only produces improvements in symptoms.

My best guess is that a cure will come either by accident (Rituximab for example was an accidental find, aka serendipitous) or because we finally figure out what is going wrong. Its advances in our understanding of pathophysiology that matter.

Having said all that on rare occasions, and always clouded by questions of diagnosis, a very very few long patients do spontaneously recover. In short term patients, particularly under a year, the recovery rate is somewhat higher.

My caveat to that is the small research study by Dr David Bell, on ten recovered patients. Not one had really recovered, they had just improved enough to have something of a normal life, though with a bunch of symptoms still remaining.

There are however many treatments that improve symptoms, including those used by SOC and heapsreal. Many of us find things that help.

I would like to second heapsreal's call to consider pacing as a treatment, and that rest is a part of pacing. Pacing is free, it can help with symptoms (much of the time), so its always worth considering if you are not already pacing yourself.

I would also like to add that pacing is tricky because as mentioned your limits will keep changing.

Does anyone recall the details about the 2/3 of Rituximab study patients who are responders? That is, do the responders include those who had "partial" improvement, "significant" improvement as well as those who achieved total remission?

And if so, what is the definition of "significant" improvement? And what % of those 2/3 achieved this?

I think I've read it before but can't remember where...

I agree -- Rituximab is the closest thing we have (or could have) at the moment.