Realistically there is no cure?

[heapsreal]

I think we have to realise for most there is no cure. There are treatments to help manage this illness and also improve peoples function. There is also those in the less than 3 year category who seem to have higher odds of recovery.Even a few experimental treatments that are promising, seem to require ongoing treatments.

I didn't start this thread to be negative but to be realistic. I think some people who come here initially, think that taking certain vitamins etc can cure them after reading certain threads etc. maybe they have high expectations and maybe over look what's really being posted or they are new here and don't really know the person making the claims of certain treatments.

I think people can read a thread where someone has said, wow! I feel amazing after that b12 injection and the wow for the actual person is that they maybe able to walk without the constant nerve pain in their feet for example, but others reading it may think the wow is that this person is now hitting the gym up five times a week. When someone says a treatment works or helps, it's hard to quantify as well as knowing from where one has come from and where a certain treatment has taken them to???

I think currently we need to realise that there isn't any treatments that are going to bring us back to pre cfs/me state and we need to adjust our expectations. But there is more hope then there ever has been with some very bright minds working on trying to solve this mess. We are always going to be under funded but it is amazing how much researchers have been able to find out about cfsme. We don't know how long it's going to take to find all the answers but it only take one ah ha moment or a fluke discovery just like many other illnesses and it will all be solved.

There are also many things that are Under rated such as rest and pacing. For many it seems to be a lesson learnt through personal experience to know where their boundaries are, which can also change regularly. Managing this illness is an ongoing experiment of trial and error, ups and downs, crashes and crashes.

Cheers.

 

[justy]

Hi Heaps - this is a really thoughtful post, which resonates strongly with me. Interesting that it is you posting it as both you and @SOC are my benchmarks in my mind for people who have substantially improved/or who have a better quality Of life through treatments etc.

I think rest is very underrated and many of us have got worse because we have failed to truly see the importance of this.

15 years ago I mistakenly believed I had seen the back of this illness for good. Three years ago I mistakenly believed I was stable, able to bounce back from pushing and not someone with a progressive trajectory - I was very wrong on both counts. I do know that we don't know where we are ever with this illness and what we think is true one moment can drastically change the next.

 

[heapsreal]

Hi Heaps - this is a really thoughtful post, which resonates strongly with me. Interesting that it is you posting it as both you and @SOC are my benchmarks in my mind for people who have substantially improved/or who have a better quality Of life through treatments etc.

I think rest is very underrated and many of us have got worse because we have failed to truly see the importance of this.

15 years ago I mistakenly believed I had seen the back of this illness for good. Three years ago I mistakenly believed I was stable, able to bounce back from pushing and not someone with a progressive trajectory - I was very wrong on both counts. I do know that we don't know where we are ever with this illness and what we think is true one moment can drastically change the next.

I think soc and myself have improved alot with treatments and also had relapses. Even if i felt 100% i just wouldn't be game to say cured, ME is too dam sneaky.

When i did my first 12 months on famvir it took me to a 9 out of 10, still some symptoms like insomnia . But i thought i was out of the woods. I even wrote an email to my cfs dr thanking him and basically announcing my cure and saying i wont need him any more. Several months later i crashed back to pre antiviral level and climbed my way back up but not as high.

i have had several ups and downs with recent shingles episode knocking me down 'again'. I just find its a constant battle of picking yourself up and climbing up again to where i was prior to the crash .

I guess Im trying to tell people that even if one improves it doesn't go away and always need to be on the lookout. Also try not to feel guilty or beat yourself up when we require extra rest and recovery, or the dishes are piling up and need washing, sometimes we just have to let things pile up and deal with it later.

 

[Sasha]

@Jonathan Edwards - is cure theoretically possible with Rituximab? Or just remission?

 

[heapsreal]

@Jonathan Edwards - is cure theoretically possible with Rituximab? Or just remission?

If rituximab turns out to be a treatment more than a cure than it may lead researchers to find out where we are broken.

if it turns out a cure great , we dont have to look as hard why we are broken.

a treatment /cure of any sort should still help non responders just like the Norwegian researchers who a trying other immune treatments for rituximab non responders.

the positive thing about current research is that it's spread all over the world like Norway, USA , Spain , UK, australia and it seems diverse in what they are looking for.

 

[alex3619]

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 term 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.

 

[Sasha]

At the mo, when well-studied diseases such as Parkinson's, MS and so on aren't curable, I think that finding a cure for us in the next few years is unlikely.

But I think it's possible that there may be things that lead to huge improvements of quality of life, or to lengthy, even if partial remissions.

For any of us here who've been significantly disabled for decades, that would be a huge, huge thing. The lack of a cure wouldn't bother me too much if I could get significant function back. It wouldn't take much to give me a massive improvement in quality of life. Even going up the scale from 10% function to 20% function would be a very big deal. Getting to 50% would be AMAZING.

 

[Jonathan Edwards]

If rituximab turns out to be a treatment more than a cure than it may lead researchers to find out where we are broken.

if it turns out a cure great , we dont have to look as hard why we are broken.

a treatment /cure of any sort should still help non responders just like the Norwegian researchers who a trying other immune treatments for rituximab non responders.

the positive thing about current research is that it's spread all over the world like Norway, USA , Spain , UK, australia and it seems diverse in what they are looking for.

I have no real idea whether or not B cell depletion treatment might be curative for some ME but it does appear to cure some autoimmune problems.

And I got quite a surprise this week. I am at a conference on brain science and consciousness. Nothing to do with ME, except that lo and behold one of the presenters with the most interesting new research says that his main project is Gulf War Syndrome and ME. He is interested in impaired brain function and also in the effects of anaesthetics. It suddenly struck me that ME might actually become a trendy area of study. People are wanting reasons to study subtle changes in brain function and they are looking around for conditions where there are still bit questions to answer. ME seems to be getting mentioned in the same breath as Alzheimer's Parkinson's, depression and MS. It may not necessarily show up on project titles but my impression is that all sorts of people are taking ME seriously - all of a sudden.

It may all be about microtubules.

 

[redaxe]

Does noone here believe that Dr Lerners claims to treating patients with CFS have been successful? His website makes some pretty strong claims to the causes and treatment of CFS and that former patients are living productive lives. Dr Lerner himself treated his CFS/ME illness with antivirals and he is still working fulltime at an age that most people wouldn't event contemplate working?

This work has been taken up by the Stanford researchers so it seems to be moving towards 'peer acceptance'.
http://med.stanford.edu/chronicfatiguesyndrome/infections/herpes/herpes-experts.html

 

[Sasha]

I have no real idea whether or not B cell depletion treatment might be curative for some ME but it does appear to cure some autoimmune problems.

I call that very promising!

ME seems to be getting mentioned in the same breath as Alzheimer's Parkinson's, depression and MS. It may not necessarily show up on project titles but my impression is that all sorts of people are taking ME seriously - all of a sudden.

I also call that very promising!

It may all be about microtubules.

That's a new one on me. Doesn't sound very glamorous ('It's me microtubules, Mum!') but then, beggars/choosers.

 

[redaxe]

I think soc and myself have improved alot with treatments and also had relapses. Even if i felt 100% i just wouldn't be game to say cured, ME is too dam sneaky.

When i did my first 12 months on famvir it took me to a 9 out of 10, still some symptoms like insomnia . But i thought i was out of the woods. I even wrote an email to my cfs dr thanking him and basically announcing my cure and saying i wont need him any more. Several months later i crashed back to pre antiviral level and climbed my way back up but not as high.

I'm guessing you completely stopped antivirals? Dr Lerners protocol is that you have to stay on antivirals indefinitely to hold the virus in latency.
Maybe the viral infection can be seen in a similar manner to cold sores? Every time you get a flare up your immune system is weakened and you ultimately need treatment to hold the coldsore virus in check? But essentially if you take treatment and the coldsore disappears the virus could still be there it is just in latency waiting for the next opportunity to surface. That seems to be the reason why longer term therapy is more successful.

 

[heapsreal]

Sorry i cant post a link
but as @alex3619 mentioned dr bell, if one googles dr bell 25 year study cfs, they should find the article. Basically showing how people adapt and some say recovered but still have alot more symptoms than healthy people.

@Jonathan Edwards the brain studies sound interesting comparing MS, parkinsons etc. This may complement the Australian cfsme researchers at Griffith university as they are also researching MS. I did hear they were going to do a study comparing immune markers amongst ME, MS and RA. Its good to see illnesses like these being compared and they can all benefit from this.

 

[lansbergen]

It may all be about microtubules.

https://en.wikipedia.org/wiki/Microtubule

 

[heapsreal]

I'm guessing you completely stopped antivirals? Dr Lerners protocol is that you have to stay on antivirals indefinitely to hold the virus in latency.
Maybe the viral infection can be seen in a similar manner to cold sores? Every time you get a flare up your immune system is weakened and you ultimately need treatment to hold the coldsore virus in check? But essentially if you take treatment and the coldsore disappears the virus could still be there it is just in latency waiting for the next opportunity to surface. That seems to be the reason why longer term therapy is more successful.

I think your right.

About 6 years on antivirals. I have made a few attempts to stop but within 2 to 4 weeks viral symptoms return. My last antiviral free period i ended up with shingles, so i will remain on them now until they find a cure.

 

[redaxe]

It suddenly struck me that ME might actually become a trendy area of study. People are wanting reasons to study subtle changes in brain function and they are looking around for conditions where there are still bit questions to answer. ME seems to be getting mentioned in the same breath as Alzheimer's Parkinson's, depression and MS. It may not necessarily show up on project titles but my impression is that all sorts of people are taking ME seriously - all of a sudden.
It may all be about microtubules.

Well we certainly are starting to overcome the research stigma that seemed to go along with this illness. The Open Medicine Foundation (Ron Davis, James Watson), then there is Ian Lipkin and the Stanford University team headed by Dr Montoya. I think when you start getting big names and prestigious institutions getting involved than it does start to rapidly change perspectives - far more effectively than patient advocate groups or go-it-alone doctors/researchers which is mostly all we've had until now.

I think it was even Cort Johnson that might have mentioned that Dr Jose Montoya has been drumming up a lot of interest saying that this might well be the last big area of human disease to be unlocked. So the potential for researchers to get their names engraved into medical textbooks is there.

 

[redaxe]

I think your right.

About 6 years on antivirals. I have made a few attempts to stop but within 2 to 4 weeks viral symptoms return. My last antiviral free period i ended up with shingles, so i will remain on them now until they find a cure.

That sounds like it could be part of your problem. Dr Lerner diagnosed me with HHV6 so its Valcyte until remission and then on to Valtrex indefinitely I guess??? Dr Lerner uses Valtrex to hold HHV6 in latency but in his view it is ineffective until the virus has already been pushed into latency. Valtrex has far weaker activity against HV6 but it has less health risks associated with long term use.

But now that we have more and more researchers getting onto this I think we can start seeing research looking into the human tissues for stealth viruses. It is staggering if you look through pubmed how many chronic neurological diseases and autoimmune conditions correspond to an increase in immune activity against certain viruses and pathogens.
Stanford University seems to have picked up on this too - they have taken a lot of Dr Lerners work to heart so I find that very interesting. With more money and research staff perhaps they can further validate his work.
http://med.stanford.edu/chronicfatiguesyndrome/infections.html

 

[MikeJackmin]

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.

 

[Sean]

Far as I am concerned, there is currently no proven, effective, substantial, active treatment, let alone cure.

It is a hard truth, but we do ourselves no favours pretending otherwise.

 

[Marco]

It may all be about microtubules.

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.

 

[Marky90]

Far as I am concerned, there is currently no proven, effective, substantial, active treatment, let alone cure.

It is a hard truth, but we do ourselves no favours pretending otherwise.

Rituximab, when you take into account that we are operating with subsets. IVIG also springs to mind.