Realistically there is no cure?

[Sushi]

The title of this thread is Realistically there is no cure? And Heapsreal's opening post indicated that he intended that to be the parameters of this discussion.

If we want to debate the Pros and Cons of individual treatments--like Rituximab--please go to one of the threads dedicated to that subject rather than derailing this one.

 

[Violeta]

I am about 95% better, don't give up.

 

[JamBob]

It seems overoptimistic to me to hope for a cure* - how many diseases actually have "cures" rather than adequate treatments?

I live with lots of chronic (mostly endocrine) disease, my glands are destroyed so I don't waste my time worrying about cures. There is plenty of money in diabetes research but all they ever cure is diabetic mice! Although it would be nice not to have T1 diabetes, insulin keeps me alive and ameliorates the symptoms of diabetes. I feel lucky to be born after the discovery of insulin.

The big issue in ME/CFS is that there is currently no effective available treatment. In the short term, ME/CFS sufferers needs some kind of "insulin" equivalent - this would help people straight away and improve people's quality of life, while scientists are working on discovering a cure.

*People have told me diabetes would be cured "in the next 5 years" the whole time I have had diabetes. I hope it will happen in the next 50 years, but research, trials and studies take a long time.

Also just thinking about it - diseases that are deemed "treatable" often don't even get researchers looking for a cure. I'm thinking of thyroid disease and adrenal insufficiency. Nobody seeks to "cure" those diseases as they assume replacement therapy is just fine enough for patients.

 

[Sean]

"there is currently no proven, effective, substantial, active treatment, let alone cure."

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

There are some interesting & promising possibilities in the works, and there may well be such therapies available soon in the regular clinic.

But not yet.

 

[Seven7]

I am about 95% better, don't give up.

How long you been sick and what treatment are you on ?

@heapsreal I came to the same conclusion a while back, some that do have lyme or some other infection they do recover when the original infection is found but that is the minority and timing is important. Also, I think once you have ME you have to be careful the rest of your live. I have seen too many to relapse later on in live by another event.

I think we need extra support for nutrition, and Repair the gut. And have to be more careful than most. FOR EVER.

 

[Violeta]

I've been sick for 32 years, too many symptoms to list, started getting better last year when I started taking choline, then B2, then had a bad lung infection, started looking at MCAD because it also seemed like something allergic about it. I saw a lot of people saying their MCAD started when they came down with Lyme, and I noticed that there was a metal problem involved, so I started learning about those two issues and taking supplements form them. Lastly and most recently I started taking a few things for viruses and the immune system, namely lomatium, echinacea, and colostrum. Those gave me a real energy boost. I've been able to eat more variety of foods, but still need improvement in that area.

I do agree that I'll have to be careful for the rest of my life, yes, support for nutrition and repair the gut.

 

[Eeyore]

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.

Very interesting. Most of my recent thinking ties ME to Alzheimer's, Parkinson's, and MS as well. Especially MS.

There was a thread on these forums a while ago where people discussed Parkinson's, and there were some family histories strikingly positive for PD, in some cases in nearly every family member besides the proband. My paternal grandmother had Parkinson's, and also had a life of rather odd illnesses that no one could ever really figure out (lots of GI - probably autoimmune - mostly before I was born).

I think one problem with ME research has been the training of doctors to think in terms of systems. You need more of a big picture approach. If you look at one system, you don't see much, and you don't see any patterns. You have to step back and really try to fit all the pieces together.

I think we are not far from a sound scientific basis for ME. I think, as Dr. Edwards mentions may happen, that it will turn out to fit with the neurodegenerative / autoimmune diseases, and that there will be a very strong genetic component.

 

[angee111]

Honestly, I would be completely content with effective treatment that significantly improved my quality of life and allowed me to at least live like a semi-normal person. Sure, never having to worry about taking my medication or making sure I eat well 100% of the time and making sure I get enough rest would be fantastic. At this point in time however, having to be reliant on regular treatment but being able to work, create a social life and create meaning in my life would be enough.

 

[Eeyore]

I think the quality of our lives would improve dramatically just knowing we could walk into a regular doctor's office and be taken seriously, treated with compassion and respect, and believed. It's particularly frustrating for me as a scientist to feel ostracized by other scientists who dismiss me as a kook.

Beyond that, taking some pills or even going in for an IV from time to time but feeling good would be a far better life than being sick and isolated, which is how we live now. If I didn't have a wonderful and supportive family (with the means to care for me without undue stress on them) I'd be really screwed.

A cure would be great, but I think many of us aren't even looking that far out yet. We just want something better than what we have now, and the feeling that medical science is building on that and moving forward.

I feel like we are more or less unique among illnesses in terms of how little respect we get from docs. I hope Dr. Edwards' words are prophetic and this really is the beginning of major research in ME. If nothing else, a positive phase 3 trial from Fluge and Melle would accomplish that. Rituximab doesn't help psychosomatic patients more than placebo.

 

[waiting]

Definitions are helpful in discussions like these. Here are some for "treatment":

http://medical-dictionary.thefreedictionary.com/treatment

 

[lansbergen]

It may all be about microtubules.

But what causes the cellskeleton malfunction?

 

[Gingergrrl]

Didn't read this thread but agree with Heaps that there is no cure and I don't see one happening in my lifetime.

 

[Sean]

Didn't read this thread but agree with Heaps that there is no cure and I don't see one happening in my lifetime.

Agree with the first part, but not necessarily with the second.

There is a good chance that this is not actually a difficult scientific puzzle to solve (given existing technology and understanding), and that the main reason we don't yet have a solution is because there has not been a fair effort to find one. That is a political and funding issue, which is something that can change quickly.

The psychosomatic advocates better be praying it is technically difficult, because if it isn't they are in a world of pain over their filthy denying and delaying tactics. The sooner we get some real answers, the worse it looks for them.

 

[maddietod]

I agree that a cure is very unlikely. All of us seem to have patterns of dysfunction, not just a single issue, so we've each got a variety of systems that aren't working right. Sorting out those individual problems is hard enough, but of course they're also interconnected in constantly shifting ways.

I think we're more likely to get therapies that increase functionality, tailored to our individual patterns.

 

[Gingergrrl]

There is a good chance that this is not actually a difficult scientific puzzle to solve (given existing technology and understanding), and that the main reason we don't yet have a solution is because there has not been a fair effort to find one. That is a political and funding issue, which is something that can change quickly.

I guess I see it as more complex with all the different subgroups as I know my main issues are vastly different than others here and vice versa. I also do not see the political or funding issues chnaging soon. Believe me, I wish I did, but I just don't. I would love to be proven wrong and learn tomorrow that the Big Data severely ill pt study by OMF is now fully funded but I just don't see it.

 

[Marky90]

I guess I see it as more complex with all the different subgroups as I know my main issues are vastly different than others here and vice versa. I also do not see the political or funding issues chnaging soon. Believe me, I wish I did, but I just don't. I would love to be proven wrong and learn tomorrow that the Big Data severely ill pt study by OMF is now fully funded but I just don't see it.

A big issue is that this patient group is often so disabled, that few have the energy for political activism.

Of course, thats no excuse, because we are not supposed to do the work anyway.

There really is no good excuse for the lack of funding over the years, its one of the biggest disgraces in healthcare i have witnessed. Up there with the disrespect for MS-patients etc. As pointed out before, the biggest issue is that we are not actively dying! Because then others would be afraid to get it as well (aids anyone?) And then money would go into the pot. I am sure.

Perhaps we should start a uproar, claiming that we all infected each other? That would cause some concern. But probably just send us straight to the psyciathric ward..

The good news, a positive phase 3 ritux trial will probably set fire to the rain

 

[Sushi]

agree with Heaps that there is no cure and I don't see one happening in my lifetime.

Of course this also depends on what age we are. Young or old, it is remarkably tough--those who are diagnosed and disabled while young see their future evaporating but...there is also there more chance that this will be figured out in their lifetime--though they may have lost a lot of it by that time.

For those who are older, they have already lost decades of their life as, even if they weren't diagnosed when they were young, it is fairly likely that they started to get ill in that period of their lives. For them, they are much less likely to see "a cure" in their lifetime. I hope new studies will include them even though they are well past the 3 year marker.

In 2006 my autonomic specialist (who agreed that dysautonomia was part of a larger disease spectrum i.e. ME/CFS/SEID), told me that he didn't expect to see it completely unraveled in his lifetime. He was/is a patient himself and one of the older bunch.

But cure or not, we are slowly getting more symptom-relief options available. I'll take that for now.

 

[leokitten]

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.

From my personal experience and living with milder ME it seems like all the symptoms get better and worse together? Is this something specific to only particular people or milder ME as a whole?

 

[Sushi]

From my personal experience and living with milder ME it seems like all the symptoms get better and worse together? Is this something specific to only particular people or milder ME as a whole?

That is my experience too.

 

[Sean]

That is my experience too.

I am a more severely affected, long term patient, and that is also my experience.

The exact balance of symptoms can vary to some degree, but the basic package has remained remarkably consistent for more than 3 decades now.