Is Anyone Else Scared of Rituxan?

[Nielk]

Do you want to know what Dr. Jason, Dr. Klimas and Dr. Natelson all said to me at the NIH P2P??? One of the major reasons that ME/CFS only gets $5-6 million is not because the NIH doesn't care it's because in the U.S. there is almost no one researching the disease and there are actually very few grant applications that ask for money directly under the ME/CFS category.

There aren't many researchers in the U.S. doing CFS research, that's the major reason.

So I'm sorry do you disbelieve all three of them?? And remember that $5-6 million is only for grants funded under CFS, there are many other grants funded under other similar categories where they are also doing studies on ME patients but it's under another category.

Have you asked the following ME/CFS research institutes in the US how much NIH funding they get a year?

Simmaron Research
Chronic Fatigue Initiative
Stanford Chronic Fatigue Initiative
Open Medicine Institute
Stanford School of Medicine/Chronic Fatigue Department of Medicine
solve ME/CFS Initiative
Columbia University/ Dr. Lipkin's Microbe Discovery Project
Mt. Sinai/ Dr. Enlander ME/CFS Research Initiative

 

[heapsreal]

Isnt the reason lipkin is fund raising patients and the public is because he cant get govt funding for his research . I thought that was comm9n knowledge .

 

[dannybex]

They said because when a researcher thinks about having their lab do ME/CFS research they see the current NIH yearly funding of $5-6 million and they decide to go into another field because they get fearful that they cannot build a career in an field with such low funding. So the catch 22 is that most researchers don't ever go into ME/CFS research.

I agree in general with that. But there are people who have managed to create a 20-30 year career "researching" CFS, like Dedra Buchwald at the notorious Harborview CFS Clinic here in Washington State. It's just not the kind of research anyone wants or needs. Her answer always comes down to CBT and graded exercise as being the best treatments. Everyone in my local support group knows to avoid the clinic like the plague.

Here's a typical study from Buchwald, from 2014, and again, this is after 20+ years of similar studies:

http://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.160.2.221

"Treatment for chronic fatigue syndrome is symptom-based and includes pharmacological and behavioral strategies. Cognitive behavior therapy and graded exercise can be effective in treating the fatigue and associated symptoms and disability."

 

[Gingergrrl]

Do you want to know what Dr. Jason, Dr. Klimas and Dr. Natelson all said to me at the NIH P2P??? One of the major reasons that ME/CFS only gets $5-6 million is not because the NIH doesn't care it's because in the U.S. there is almost no one researching the disease and there are actually very few grant applications that ask for money directly under the ME/CFS category.

I am sorry but this is complete nonsense. I know for absolute fact that NIDA and the End ME/CFS Project of OMF have requested money for specific studies and been denied. And they have probably the top team of scientists in the world on their research team.

I have been sicker this past month than in my entire life from this illness with a few points that I was not sure if I was going to live and reading these statements are ridiculous.

Dr. Ron Davis is literally trying to save his sons life from dying of severe ME and I personally heard he and his wife speak at an event and he had asked for funding many times and he has been denied. Period. And so has Dr. Ian Lipkin- and because of Dr. Lipkin's denial, a crowd funding campaign was created by Vanessa Li, God rest her soul.

 

[redaxe]

I wonder if the partial success rate of Rituximab might be linked to the persistent viral theory.

Rituximab is B cell depleting. We know that B cells can harbor Epstein Barr Virus. We know that often the classic onset for CFS is after a bout of infectious mono.

Conveniently for EBV - B cells can reproduce via clonal division and through that method EBV also spreads to the two daughter cells. I'm guessing this means of EBV disease progression would occur regardless of antiviral activity of Valtrex? Hence Valtrex would be ineffective against a virus that has incorporated itself into the host-cell DNA and is reproducing via a non-lytic pathway?

After all EBV seems to have an association with Multiple Sclerosis but Valtrex is not an effective treatment for MS. But boosting a patients immunity to EBV may be a promising treatment
http://www.msra.org.au/QLD-breakthrough-progressive-ms
So possibly there is some pathological similarities between MS and CFS. In short I'm not sure if we should try and see autoimmunity and persistent viral infections in separate universes. There may be something going on that hasn't been studied closely enough.

So perhaps we need B cell depletion and antiviral activity simultaneously to stop any free-EBV from reinfecting new B cells as they are produced?
Even if this theory was true it would only work for a subset of CFS patients. My serology for instance shows either no or undetectable antibodies to EBV or early EBV antigens which maybe implies I've never had EBV.
So maybe this is something that patients trialling Rituximab can consider. Valtrex is reasonably safe and might be a good idea to take with a B cell depleting drug as it might help your immune system hold back some viruses that are suspected to be a problem in CFS - particularly EBV which specifically targets B cells for infection.


Secondly I think we should be keeping an eye on the antiviral drug DRACO as it progresses and trying to find ways to get a trial started for it. DRACO. Quoting from the below article.
DRACO (Double-stranded RNA Activated Caspase Oligomerizer) is designed to detect cells that have been virally infected and then eradicate only the infected cells, rapidly ending the infection. DRACO has proven effective in vivo against influenza and three hemorrhagic fever viruses, and in vitro against 15 different viruses—including common cold viruses, the H1N1 influenza strain, adenoviruses, a mouse polio virus, dengue fever, and stomach viruses, among others. It has also been tested and proven safe in both mice and 11 different human and animal cell types representing organs like the heart, lungs, liver, and kidney, among others.

http://www.rdmag.com/news/2014/01/new-nanotechnology-traps-viruses-they-infect-host-cells

 

[jimells]

in the U.S. there is almost no one researching the disease and there are actually very few grant applications that ask for money

So why don't they go recruit some researchers? That seems to work for the Army...

 

[leokitten]

I am sorry but this is complete nonsense. I know for absolute fact that NIDA and the End ME/CFS Project of OMF have requested money for specific studies and been denied. And they have probably the top team of scientists in the world on their research team.

I have been sicker this past month than in my entire life from this illness with a few points that I was not sure if I was going to live and reading these statements are ridiculous.

Dr. Ron Davis is literally trying to save his sons life from dying of severe ME and I personally heard he and his wife speak at an event and he had asked for funding many times and he has been denied. Period. And so has Dr. Ian Lipkin- and because of Dr. Lipkin's denial, a crowd funding campaign was created by Vanessa Li, God rest her soul.

Please go ahead and ask Dr. Klimas, Jason or Natelson yourself and they will tell you the same thing they told me.

Explain to me why the NIH chose to give a lot of money to Dr. Younger, Dr. Shungu, the ME Biobank and others?

It doesn't make any sense to me, if they just didn't believe in ME research they wouldnt give any money to anyone or no one except the top researchers in the field.

So they give a lot of money to certain researchers who aren't the most well known but when it comes to Lipkin and OMF they denied them does this mean they are against ME research? Doesn't make any sense whatsoever.

 

[Gingergrrl]

Please go ahead and ask Dr. Klimas, Jason or Natelson yourself and they will tell you the same thing they told me.

Explain to me why the NIH chose to give a lot of money to Dr. Younger, Dr. Shungu, the ME Biobank and others?

It doesn't make any sense to me, if they just didn't believe in ME research they wouldnt give any money to anyone or no one except the top researchers in the field.

So they give a lot of money to certain researchers who aren't the most well known but when it comes to Lipkin and OMF they denied them does this mean they are against ME research? Doesn't make any sense whatsoever.

I do not know Klimas, Jason or Natelson and cannot ask them!

I also have no knowledge re: the other people who you said the NIH funded so cannot comment.

I do however have solid factual info on the people who were denied. I volunteered for NIDA/End ME/CFS Project last year (now too ill) and have emails to back up my claims but they were in confidence so obviously I cannot post them. And Vanessa's group can speak to Dr. Lipkin's study being denied which is not in dispute.

I think your workplace is not being honest with you and I understand being loyal to a workplace b/c I did it for years even to the detriment of my health.

 

[leokitten]

I do not know Klimas, Jason or Natelson and cannot ask them!

I also have no knowledge re: the other people who you said the NIH funded so cannot comment.

I do however have solid factual info on the people who were denied. I volunteered for NIDA/End ME/CFS Project last year (now too ill) and have emails to back up my claims but they were in confidence so obviously I cannot post them. And Vanessa's group can speak to Dr. Lipkin's study being denied which is not in dispute.

I think your workplace is not being honest with you and I understand being loyal to a workplace b/c I did it for years even to the detriment of my health.

I don't have the energy to debate this but you are making false statements to a group of very ill people.

BTW I have ME/CFS and I am very sick as well, my life is hell and i have no choice but to work full time. Everyone on PR knows how terrible it is to have to work every day while battling this illness, honestly I think it's worse than being on disability and being at home.

Just because there are two prominent project examples, Lipkin's microbiome and OMF's big data projects that didn't get funding doesn't mean that the NIH is currently against ME research.

It's the fact that there are probably a total of 15 groups in the U.S. doing ME research and asking for various project funding and that most are getting denied that leaves just a few who get funding.

With other diseases there are 100s of groups and most of them also get denied too but that still leaves 100s that get funding so no one cares.

It's the fact that there is basically no one doing research on ME in the U.S.

I agree more with @Snow Leopard's comments and to add to that the fact that no single institute at the NIH currently has responsibility for the disease since no one knows what kind of disease it is. ME/CFS has no home at the NIH and this results in a lack of leadership and things slipping through the cracks.

 

[halcyon]

Everyone on PR knows how terrible it is to have to work every day while battling this illness

Not exactly. There are many here who are far too ill to work.

honestly I think it's worse than being on disability and being at home.

Nobody is qualified to make a statement like this. I was stricken with sudden onset, going from working more than full time to suddenly being unable to work. I'm not qualified to state that my situation is worse than yours, just like you can't state that your situation is worse than mine if you haven't spent months or years in bed unable to leave the house. Let's accept that both situations are a nightmare and not get into a competition about who has it worse.

 

[Gingergrrl]

@leokitten

BTW I have ME/CFS and I am very sick as well, my life is hell and i have no choice but to work full time. Everyone on PR knows how terrible it is to have to work every day while battling this illness, honestly I think it's worse than being on disability and being at home.

I have no doubt you are suffering greatly and I remember chatting with you re: blood volume and that Daxor test and have great respect for the work you have done and continue to do and hope you view this as healthy debate and we are on the same team fighting for research funding.

I do find it hurtful that you said it is easier to be home on disability though. I loved my career and put my soul into it for 16 yrs and worked until the bitter end when my body gave out in 2014. I did not think it was possible to become more ill than I was back then but would now do anything to go back to that time.

I was just in hospital for five days and do not yet have a solution for how to eat without MCAS anaphylactic reactions and have to be pushed from bed to bathroom in wheelchair. Believe me, if I could work again, I would do it.

Just because there are two prominent project examples, Lipkin's microbiome and OMF's big data projects that didn't get funding doesn't mean that the NIH is currently against ME research.

But these two examples are our most motivated and brightest minds and our greatest hope of finding a cure. All they need is the funding and the Big Data study of our most severely ill patients would be going on right now!!!

It's the fact that there is basically no one doing research on ME in the U.S.

I don't see how you can make that statement when NIDA, OMF and Lipkin are trying to do research now!!!

and to add to that the fact that no single institute at the NIH currently has responsibility for the disease since no one knows what kind of disease it is. ME/CFS has no home at the NIH and this results in a lack of leadership and things slipping through the cracks.

I agree with this as well and it is a system wide issue with many problems that need to be addressed.

 

[Marky90]

I think Leokitten meant that its easier being home on disability, in the sense that you get less symptoms when youre not pushing through your ME. I know that certainly was the case for me, and I only worked part time.

 

[halcyon]

I think Leokitten meant that its easier being home on disability, in the sense that you get less symptoms when youre not pushing through your ME

Some experience the same push and crash cycle just performing ADLs. There is nothing easier about it. Let's move past this, there's no point in comparing the two. We're all suffering, that's the reality.

 

[Gingergrrl]

I think Leokitten meant that its easier being home on disability, in the sense that you get less symptoms when youre not pushing through your ME. I know that certainly was the case for me, and I only worked part time.

I think it also depends on the severity and progression of your illness as well as some people at home have families, children and pets and other responsibilities. But I do not really need to debate this aspect b/c in the year I have been home I became sicker than I ever dreamed possible. I imagined like many others that not working would allow me to get better but in my case, that did not occur. But as @halcyon said, there is no positive purpose in debating who has it worse off and will only cause hurt feelings on both sides IMO.

 

[leokitten]

Not exactly. There are many here who are far too ill to work.


Nobody is qualified to make a statement like this. I was stricken with sudden onset, going from working more than full time to suddenly being unable to work. I'm not qualified to state that my situation is worse than yours, just like you can't state that your situation is worse than mine if you haven't spent months or years in bed unable to leave the house. Let's accept that both situations are a nightmare and not get into a competition about who has it worse.

Of course I can make that statement and it's 100% true.

When you can fully control your life, energy expenditure, stress, external inputs, interactions, lighting, noise, etc etc, this helps to reduce symptoms.

With a full time job you CANNOT DO ANY OF THIS, you have almost no control over anything. I am in constant PEM and with constant terrible symptoms and I crash EVERY SINGLE WEEK. The only reason I can continue to work is that for some reason my body can still recover from the crash more quickly than most.

So I'm sorry to upset anyone but it's the truth, this disease and life in general is 100x worse when you have to work all the time. I honestly don't care if it upsets anybody.

 

[Gingergrrl]

Some experience the same push and crash cycle just performing ADLs. There is nothing easier about it. Let's move past this, there's no point in comparing the two. We're all suffering, that's the reality.

Agreed on all counts. I can no longer take a bath without assistance as embarrassing as this is to admit. Let's move on and put this to rest and let the thread go back to the topic of Rituxan. My only reason fur posting was my pure sadness and anger that the US Govt (all of it not just NIH) will not fund some incredible research proposals like OMF and Lipkin.

 

[Marky90]

I think it also depends on the severity and progression of your illness as well as some people at home have families, children and pets and other responsibilities. But I do not really need to debate this aspect b/c in the year I have been home I became sicker than I ever dreamed possible. I imagined like many others that not working would allow me to get better but in my case, that did not occur. But as @halcyon said, there is no positive purpose in debating who has it worse off and will only cause hurt feelings on both sides IMO.

I agree. If you got mild/moderate, it will indeed be "easier" being home, if you got severe ME, calling it "easier" becomes wrong. But thats not what Leokitten meant in the first place, so there is no conflict here

 

[Sidereal]

When you can fully control your life, energy expenditure, stress, external inputs, interactions, lighting, noise, etc etc, this helps to reduce symptoms.

With a full time job you CANNOT DO ANY OF THIS, you have almost no control over anything. I am in constant PEM and with constant terrible symptoms and I crash EVERY SINGLE WEEK. The only reason I can continue to work is that for some reason my body can still recover from the crash more quickly than most.

You couldn't be more wrong about this. ME can get so severe that no amount of controlling your life reduces symptoms. Halcyon talked about ADLs. Hell, some people are so sick they can't even do their ADLs and merely existing can keep them in permanent PEM.

I've been where you are now and at virtually every point on the spectrum of severity. If you think your life is hell right now, which no doubt it is and I sympathise with your situation 100%, let me tell you what total hell feels like: severe pain 24/7, permanent PEM despite spending virtually every minute lying down and resting, hypersensitivity and pseudoallergic reactions to all foods/supplements/meds, POTS so severe you can't even sit in bed without tachycardia, weakness of all muscles including breathing muscles, diabetes insipidus and many other symptoms.

 

[Marky90]

Guys, you need to chill. Hes talking from the perspective of one with mild/moderate, hes not drawing parallells. And anyway, it is true that for the most part, activity makes this illness worse. Theres a reason theyre proposing calling it systemic exertion intolerance disease.

 

[leokitten]

I welcome anyone to write me and meet me at the NIH in person so that this "scientist" can show you what his life is like and where he works. Feel free to write me anytime you are in Washington, D.C. area.

I know how terrible this disease can be, I know because there are many people in the support group in my area who I help at their homes. But there are many kinds of suffering and in general when you can completely control your life, your exertion, and environment including not having to work it reduces symptoms, yes it's not true for the most severe but for the majority of people with ME/CFS this is the case.