False hope?

[Wonko]

And you are still living it.

Normality sucks.

(current example is so OT I won't bother posting it here lol, I may start a rant thread later, if I don't forget and don't think it's too whiny, which it is)

 

[andyguitar]

For what it's worth in my opinion this illness is a metabolic disorder of the blood. The symptoms are caused by elevated levels of Serotonin which leads to a chain reaction of biochemical events. Probably not a popular theory. But my aim is not popularity i just want to find the truth. For those of you who are interested check my other posts. Best drug might be Doxycycline. Not cos it's an antibiotic. It has a novel property.

 

[Starlight]

My new normal is very different to the normal of most people I know.this is a very hard place to find oneself. The post written by tiger lilea a has much truth in it. . I have reached a kind of acceptance which helps on a daily basis but I also retain a vibrant hope that there will come a day when the answers are in and a treatment is available for us.reading of improvements that Jen Brea has experienced help to keep hope alive., and being part of the Phoenix Rising community helps also.When there is good news someday I know I will read it on here.In the meantime I will try to make every day as good as I can with things that interest me without losing my energy or going outside my door. I long for it to be different but making this choice every day sort of works for me and not making it would be unbearable for me. Maybe it gives me a feeling that I still have some control and that I'm not totally confined by the physical prison.

 

[BurnA]

Is there hope of effective treatments in the next decade? I am starting to think it will be a minimum of a decade. Aside from rituximab.

Am I facing a life sentence with this disease? Is that what I need to accept. Should I stop hoping and get real?
Interested in what u all think?

I havent given up hope but I do think a decade is a realistic timeframe.
But I don't think about the long term anymore I just focus on what's next.

Within the next 6-12 months we will have RituxiME and CycloME results and then possibly news of a biomarker.
ME research will snowball as soon as a biomarker is found.
There are literally hundreds of biotech companies looking to develop new molecules - ME will be like a fresh pasture for them.

Technology is advancing so much that once there is a focus on ME, i am confident it will be treatable.

The comparison to other diseases not having cures is valid but I am hopeful that ME does not cause permanent damage and so it may turn out to be like flipping a switch.
The initial Rituximab patient in Norway AFAIK was able to return to a normal life so it can happen.

 

[neweimear]

I havent given up hope but I do think a decade is a realistic timeframe.
But I don't think about the long term anymore I just focus on what's next.

Within the next 6-12 months we will have RituxiME and CycloME results and then possibly news of a biomarker.
ME research will snowball as soon as a biomarker is found.
There are literally hundreds of biotech companies looking to develop new molecules - ME will be like a fresh pasture for them.

Technology is advancing so much that once there is a focus on ME, i am confident it will be treatable.

The comparison to other diseases not having cures is valid but I am hopeful that ME does not cause permanent damage and so it may turn out to be like flipping a switch.
The initial Rituximab patient in Norway AFAIK was able to return to a normal life so it can happen.

Well hello BurnA....I never heard of AFAIK in Norway...was his recovery from rituximab and how severe was he? I wonder did he maintain health? Sounds like a great story. I imagine there will be similar success stories from cyclo..I read on the Helsen Bergen webpage that cyclo results will be published first half of 2018, same for ritux results.

When u say u don't think long term anymore and just think of what's next, do you mean in terms of research or in terms of your own life or both.

 

[Wonko]

@neweimear

AFAIK = As Far As I Know

 

[neweimear]

@neweimear

AFAIK = As Far As I Know

Oh right, I thought that was his name!!!

 

[Chocolove]

@neweimear A lot of folks here have benefited greatly from nutritional enhancement. Many plusses with vitamins and minerals being restored - not so many downsides as drugs, which by the way, deplete a lot of nutrients.

Noting that you are a Mum, there's a good possibility that your nutrients have been lowered by this process. It's well worth checking into. Sometimes you will find that even despite taking a multi vitamin and mineral you are still low and need much more, or in a different form to absorb since consumption doesn't equal absorption.

I've had great luck eating beef liver and onions and/or liver capsule supplements. Well worth a try. While we may have a disease the body is a wonderful healing machine when it gets what it needs. You may find that your kids do better with a little ground liver hidden in their meatloaf as well.

I had a wonderful immediate reaction to liver. However, many times one won't notice real recovery from a nutrient deficiency until quite a few months of supplementation... Note that the body uses enzymes to turn on its machinery and enzyme may require several co-factors to work.. For instance vitamin B1 or thiamine is required along with magnesium for the thiamine enzymes to work. Thus a multi-vitamin/mineral is a wise base to start from.

 

[JES]

Well hello BurnA....I never heard of AFAIK in Norway...was his recovery from rituximab and how severe was he? I wonder did he maintain health? Sounds like a great story. I imagine there will be similar success stories from cyclo..I read on the Helsen Bergen webpage that cyclo results will be published first half of 2018, same for ritux results.

When u say u don't think long term anymore and just think of what's next, do you mean in terms of research or in terms of your own life or both.

According to this somewhat technical chart, over a third of the patients in the Norwegian stage 2 trial had a response to Rituximab. Among the responders were some people who started with an SF-36 score of around 30, but went up to 100 during the 36 months they were monitored in the trial (0 being the lowest score, 100 being the highest). Someone who has 100 on this score would consider himself/herself completely healthy.

 

[TigerLilea]

Thus a multi-vitamin/mineral is a wise base to start from.

I recently discovered that a multi-vitamin/mineral was the very thing that was making my CFS/ME much worse.

 

[Chocolove]

@TigerLilea Sad to hear that. Any idea why?

 

[Alvin2]

While it may not be realistic to assume that the 'big thing' is around the corner, I myself have always been telling me that I would feel really stupid if I died half a year before we unexpectedly 'solved' ME to a reasonable degree

I have had this exact thought. I've considered ending my life many times and perhaps the only reason i have not done so is the hope that someday there is a treatment, we can't live if we are six feet under. As for an afterlife we have no evidence, only faith and hope.
As the Bard said The miserable have no other medicine but only hope.

My best guess is if its easily solvable once a disease mechanism is determined then it could be a couple years. This is predicated on current or near term funding leading to a mechanism, and this leading to good drug candidates that are already approved and can be repurposed. I do suspect Dr Davis' nanoneedle if proven would lead to a symptom control treatment if every drug is tested on it, but what molecule(s) are causing the block?

We can't take lessons from Parkinsons, Alzheimers, HIV and so forth because no disease follows a pattern, mechanism, cause, damage, research and luck all play parts in how treatable a disease is and how rapid progress is.

If ME/CFS is insanely hard to track down a mechanism for (or theories are untestable) it could take decades and even decades more for drugs to be developed. Personally i doubt it, if something is suppressing pyruvate dehydrogenase as Fluge/Mella have surmised then we need to know what that something is (nanoneedle can help not by drug screening but by species testing/elimination) and where it comes form. Then we can attack it. If its autoimmune for example we have drugs and can proceed to more research, it may even explain how Rituximab works (and doesn't). If its microbiome caused, then that can be attacked, transplants, a drug already available or tailor made to kill the offending bacteria/virus/fungus are possibilities. If its caused by something else such as the liver, cell danger or whatever then we can work on those, and depending on what it is may have several directions to go with or can suggest possible treatments that can be tested.

At this point all we have is questions, we have very limited data work with. The disease mechanism is extremely important unless we get lucky again and come across something better then Rituximab by chance. Perhaps the best we can currently do is to try and have physical and emotional support

 

[TigerLilea]

@TigerLilea Sad to hear that. Any idea why?

I'm not sure if it was the magnesium in it as I've had problems in the past with magnesium supplements. When I researched this online I found that there are a lot of people out there who had the same problem with multi vitamins that I was having and these were people who did not have CFS/ME.

 

[Chocolove]

@TigerLilea

I found that there are a lot of people out there who had the same problem with multi vitamins that I was having and these were people who did not have CFS/ME

Care to disclose the brand/type?

 

[Cinders66]

I think under five years is realistic for some form of treatments. There's been talk of Jen brea benefiting from mestinon, that could get trialled. I don't think ron Davis is looking at ten year time frames for his son. It's a shame rituximab results can't be revealed immediately but that's one avenue, ron Davis is already exploring any drug that might help with his way of testing, if autoimmunity is proven that's another avenue of possible drugs, if brain inflammation is proven via PET research in Japan (as the only country doing the research ) then that leads on to the drugs they're already trialing for schizophrenia inflammation (antibiotics I think) , depression is now being linked to microglila activation so if that gets intensive research (as it seems to be) then again we could benefit, there's a (large?) fecal transplant mecfs study going on in Norway, could be interesting . I dont think the cure is necessarily around the corner and the more severe the more treatments likely required but I think in 2-5 years we won't be sitting /laying here with pretty much nothing as we currently are.

Needless to say more research effort == quicker progress (we are still way behind illnesses like MS is on worldwide research effort) so I'd urge everyone to put unrelenting pressure on those who sh/could be doing more - in uk that's MRC in particular Because our charities aren't .

 

[Jesse2233]

here're some additional reasons to be pragmatically hopeful: http://forums.phoenixrising.me/index.php?threads/potential-biomedical-cures-and-hope.52053/

 

[notmyself]

from what i know,hepatitis C has now a cure..some years ago AIDS was a death sentence,not anymore now, the list goes on..It can happen it 10 years ,but it also can happen in 1 year, a breakthrough in research,finding the cause wich leads to a treatment or cure..there are still much worse disease in this world than this..diseases that doesn't give any hope ,is not the case with ME ,simply becuase we don't know exactly what is causing it.There are plenty of reason to hope that you will get back your normal life..is much better to get sick now ,than was 20 years ago..keep that in mind..what technology we have today and what was 20 years ago..

 

[BurnA]

A bit more about Maria Gjerpe in this thread

When u say u don't think long term anymore and just think of what's next, do you mean in terms of research or in terms of your own life or both.

Both really. But my life is centred around research and ME news in general, so it's hard to seperate the two sometimes.
But in life, I try not to think too far ahead and definitely not behind either.

One day at a time.
The decade will be gone before you know it.

 

[neweimear]

A bit more about Maria Gjerpe in this thread



Both really. But my life is centred around research and ME news in general, so it's hard to seperate the two sometimes.
But in life, I try not to think too far ahead and definitely not behind either.

One day at a time.
The decade will be gone before you know it.

My own life is centred around the same thing...jeez I just hope I survive the decade. I will probably try ritux in the meantime. Not waiting 10 years to give that a whirl if the results are reasonable. The NIH intramural study will find some answers, they have such advanced technology, Nath said recently 3 years for phase 1. Better than 3-5 years which is what was anticipated originally. I hope they keep the foot to the floor. How many times do we use the word hope/hopefully?!

 

[Forbin]

Ian Lipkin has said that he thinks that ME/CFS can be solved in 3 to 5 years... provided the resources are made available. http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

A marked increase in resources has recently been directed at ME by the NIH, but Dr. Lipkin has pointed out that the funding level is still "a problem."

I take his estimate of 3-5 years with adequate funding quite seriously, for, if anything, Lipkin seems very conservative and circumspect in his opinions - not one given to exaggerated predictions.

What is needed is the funding.

Don't give up. To borrow a phrase from HIV/AIDS campaigners, "Be here for the cure."