Is Anyone Else Scared of Rituxan?

[leokitten]

One problem here is that, using stomach biopsies, I believe Dr. Chia has found enteroviruses in about 40% of those tested. (someone please correct me if I have this % wrong). We don't know if the patients he tested are representative of the overall ME/CFS population, but in cases of confirmed eneroviruses, he reports good success.

Sushi

But he's also found this in healthy controls and in people without ME/CFS who have GI issues.

In general we need to be expecting more of ME/CFS experts. If they are finding something convincing then get your god damn act together and start with a open label study on like 30 patients and show the scientific community that there is something interesting here. Then proceed to an RCT with a larger cohort and show the community that the results can be replicated.

I'm tired of ME/CFS experts not going anywhere with their pet ideas. Get your act together and show us something MEANINGFUL. Then we will listen to you.

 

[dannybex]

If he actually found a cure or treatment giving remission in most patients then wouldn't we all be running to him lining up for treatment? We aren't because people know in reality it doesn't work.

With all due respect, this logic suggests that there is only one cause or one form of ME/CFS. Some things will work for some people, depending on their causes or triggers, while other things won't. IMO, there will never be 'one' cure or drug or vitamin or mineral or whatever -- for ME/CFS.

 

[dannybex]

I'm tired of ME/CFS experts not going anywhere with their pet ideas. Get your act together and show us something MEANINGFUL. Then we will listen to you.

I agree with you in general on that. So many seem to have their pet theories, and seem unwilling to acknowledge that there may be other factors involved. Mold/mycotoxins is a great example...

 

[leokitten]

With all due respect, this logic suggests that there is only one cause or one form of ME/CFS. Some things will work for some people, depending on their causes or triggers, while other things won't. IMO, there will never be 'one' cure or drug or vitamin or mineral or whatever -- for ME/CFS.

No no you are misunderstanding me. I want Dr Chia to put his money where his mouth is and show us properly that for a subgroup of PWME his ideas and treatment work. Just like Fluge and Mella are doing.

He's not doing this and has spent years just blabbing about his ideas instead of doing something truly constructive. I'm tired of this.

 

[Sushi]

I'm tired of ME/CFS experts not going anywhere with their pet ideas. Get your act together and show us something MEANINGFUL. Then we will listen to you.

No no you are misunderstanding me. I want Dr Chia to put his money where his mouth is and show us properly that for a subgroup of PWME his ideas and treatment work. Just like Fluge and Mella are doing.

I don't know specifically why Dr. Chia is not doing and publishing studies but I do know from other researchers in the field that they just can't get any money for this, as much as they would like to.

 

[leokitten]

I don't know specifically why Dr. Chia is not doing and publishing studies but I do know from other researchers in the field that they just can't get any money for this, as much as they would like to.

I am a scientist at the NIH and was involved in the P2P process and conference. I don't know who is right but there is a big disconnect somewhere because all the NIH grant people I talked to during P2P said there is money for ME/CFS research they just don't get many requests for clinical studies or they turn them down because their grant and research proposals are poorly crafted.

So I'm not sure who's telling the truth but I think that Dr. Chia hasn't really tried to do anything serious and developed a proper clinical research study and asked for money.

A lot of ME/CFS experts just don't get their acts together and it's annoying. They usually don't get money because they are sloppy and don't do good grant proposals, not because the NIH doesn't want to give money.

 

[halcyon]

I've written this elsewhere but I'm sorry I think prople need to be more critical of Dr. Chia

You act like he's some lone wolf with a wacky idea about enteroviruses, but this ignores the fact that the very people that defined this disease believed that it was caused by enteroviruses, many of whom stated this quite confidently. The idea wasn't dropped because of science proving it wrong, it was dropped because the people that believed this all died or retired, leaving only the psychosomatic proponents in their wake. Meanwhile the US was too busy obsessing over herpes viruses to pay much attention to it.

sorry he needs to put his money where his mouth is and do a proper randomized clinical trial with IFN to prove if it actually works.

What money? Fluge and Mella have the benefit of financial backing from the world's 4th richest government to help fund their trial. You know well there isn't any money available for funding clinical trials in this country.

I totally hate when ME/CFS clinicians say they did this and that and it worked for people but they never care to spend the effort to prove it to the rest of the scientific community! You want to know why it's because he knows that it won't hold water in a real RCT.

Dr. Chia has performed two clinical trials that I am aware of. Yes, both were small and open label. Neither disproved the theory, they served to show only that real enterovirus antivirals are badly needed.

In general we need to be expecting more of ME/CFS experts. If they are finding something convincing then get your god damn act together and start with a open label study on like 30 patients and show the scientific community that there is something interesting here. Then proceed to an RCT with a larger cohort and show the community that the results can be replicated.

Again, a trial to test the enterovirus theory is held back by the lack of drugs. Dr. Chia sees hundreds of patients in clinical practice. When he's not doing that, he's in the lab doing in vitro work trying to find an existing drug that could work. He's also president of a foundation that is working towards finding treatment for enteroviral diseases. He's working with the CDC as well as other labs to try to confirm his work. I understand your frustration with the lack of progress on this disease, but I feel like your anger towards the experts is misplaced. They're the ones trying to help us and they're doing their best with the resources they have.

 

[halcyon]

I believe Dr. Chia has found enteroviruses in about 40% of those tested. (someone please correct me if I have this % wrong).

82% I believe.

 

[ukxmrv]

I am a scientist at the NIH and was involved in the P2P process and conference. I don't know who is right but there is a big disconnect somewhere because all the NIH grant people I talked to during P2P said there is money for ME/CFS research they just don't get many requests for clinical studies or they turn them down because their grant and research proposals are poorly crafted..

That's what they kept saying at the UK Medical Research Council "no one sends us proposals and anyway the ones they send are really poor" and then they go and give millions to the PACE and FINE psych lobby and researchers like Dr Kerr do apply and get turned down and lose their labs/jobs.

Things were do bad in the UK that I think in the end good researchers did stop applying because they were wasting their time. It may be the same with the NIH.

Someone is not telling the complete truth to us maybe?

 

[Bob]

Prof Lipkin was recently turned down twice for a gut-microbiome grant, coincidentally in exactly the same way as Dr Kerr was turned down on multiple occasions (i.e. a single grant reviewer blocked their respective grants and both the reviewers had strange ideas about ME/CFS). Quite a coincidence considering that this was despite them applying for grants in completely different countries/continents. I would not have thought that anyone would question the quality of Lipkin's research proposals. Indeed, he seemed really very put out and annoyed about it. It seemed clear that being rejected for funding wasn't something he was used to.

I don't know enough about Chia to comment on the discussion about him, but I would imagine that it's very difficult for an individual physician to get the facilities and funds together to carry out a large-scale well-coordinated study. They also might not have the know-how to organise the methodology or the grant applications. But I do wonder why he hasn't collaborated with people like Klimas or Peterson to test his theory in a well run trial. They'd surely have the resources and knowledge to help him organise something.

 

[leokitten]

You act like he's some lone wolf with a wacky idea about enteroviruses, but this ignores the fact that the very people that defined this disease believed that it was caused by enteroviruses, many of whom stated this quite confidently. The idea wasn't dropped because of science proving it wrong, it was dropped because the people that believed this all died or retired, leaving only the psychosomatic proponents in their wake. Meanwhile the US was too busy obsessing over herpes viruses to pay much attention to it.


What money? Fluge and Mella have the benefit of financial backing from the world's 4th richest government to help fund their trial. You know well there isn't any money available for funding clinical trials in this country.


Dr. Chia has performed two clinical trials that I am aware of. Yes, both were small and open label. Neither disproved the theory, they served to show only that real enterovirus antivirals are badly needed.


Again, a trial to test the enterovirus theory is held back by the lack of drugs. Dr. Chia sees hundreds of patients in clinical practice. When he's not doing that, he's in the lab doing in vitro work trying to find an existing drug that could work. He's also president of a foundation that is working towards finding treatment for enteroviral diseases. He's working with the CDC as well as other labs to try to confirm his work. I understand your frustration with the lack of progress on this disease, but I feel like your anger towards the experts is misplaced. They're the ones trying to help us and they're doing their best with the resources they have.

He has IFN, do a clinical trial on ME/CFS patients using IFN and show us if it works.

 

[leokitten]

I don't know enough about Chia to comment on the discussion about him, but I would imagine that it's very difficult for an individual physician to get the facilities and find together to carry out a large scale study. They also might not have the know-how to organise it. But I do wonder why he hasn't collaborated with people like Klimas or Peterson to test his theory in a well run trial. They'd surely have the resources and knowledge to help him organise something.

Exactly! This is exactly what we all said during P2P, why aren't these experts collaborating and pooling resources together to get something meaningful done and really prove if their ideas about this disease and potential treatments really work. We talked extensively about having centers of excellence that are all collaborating and doing clinical studies together and pooling infrastructure and resources.

If they really believe that enteroviruses are the cause of ME/CFS in a significant subset of patients then get your act together and team up with e.g. Dr Montoya who's interested in infectious causes and many others to do a larger scale study and SHOW US SOMETHING.

Dr Chia has been publishing on ME/CFS since the late 90s, come on it's been over 15 years and you can't get your act together enough to do a larger scale study?

 

[leokitten]

Prof Lipkin was recently turned down twice for a gut-microbiome grant, coincidentally in exactly the same way as Dr Kerr was turned down on multiple occasions (i.e. a single grant reviewer blocked their respective grants and both the reviewers had strange ideas about ME/CFS). Quite a coincidence considering that this was despite them applying for grants in completely different countries/continents. I would not have thought that anyone would question the quality of Lipkin's research proposals. Indeed, he seemed really very put out and annoyed about it. It seemed clear that being rejected for funding wasn't something he was used to.

But then look for example at Dr. Shungu who did some amazing work and guess what he got a grant for over $2 million from NIH for larger scale studies.

So I just don't believe that the NIH is against ME/CFS research, but they want a quality grant proposal backed by good initial small scale studies.

 

[halcyon]

He has IFN, do a clinical trial on ME/CFS patients using IFN and show us if it works.

Ribavirin and Interferon-a for the Treatment of Patients with Chronic Fatigue Syndrome Associated with Persistent Coxsackievirus B Infection: A Preliminary Observation

 

[Bob]

So I just don't believe that the NIH is against ME/CFS research, but they want a quality grant proposal backed by good initial small scale studies.

I think historically there has been much scepticism/cynicism about ME, from the funding authorities, and funding has been purposely held back. Just look at the history of the CDC to confirm that. If things have changed recently, that's great, and there have been a number of large grants made towards ME projects, but there is still some way to go before I would feel confident that the authorities have had a transformation in their attitude. I'm hopeful but it's early days. Nancy Klimas gets her funding for ME via gulf war syndrome funding sources, and she says that obtaining funding for ME is much more difficult than GWI for various reasons. Partly because the grant givers still don't believe that ME is a serious and severe illness, and so question the need e.g. for expensive methodologies or trials of harsh drugs.

 

[leokitten]

Ribavirin and Interferon-a for the Treatment of Patients with Chronic Fatigue Syndrome Associated with Persistent Coxsackievirus B Infection: A Preliminary Observation

This is not a clinical trial or even an properly sized open label study. As he writes is just an preliminary observation. He needs to keep going with this and show the scientific community that this therapy can actually work in a larger cohort of patients.

You know ribavirin has been around for a long time and I'm sure many people on PR have tried it but we don't hear about it doing anything significant. Look at Valcyte for example this has been shown to really work for a significant subset of PWME and we saw it here on PR with patient testimonials and anecdotal evidence from clinicians in their practices and most importantly from the proper studies done by Montoya. But with IFN and ribavirin we hasn't seen this.

This is because enteroviruses if they are a cause of ME/CFS its only relevant for a very small subset. And even for this small subset a part of this group it is just a trigger and not perpetuating the disease.

 

[leokitten]

I think historically there has been much scepticism/cynicism about ME, from the funding authorities, and funding has been purposely held back. Just look at the history of the CDC to confirm that. If things have changed recently, that's great, and there have been a number of large grants made towards ME projects, but there is still some way to go before I would feel confident that the authorities have had a transformation in their attitude. I'm hopeful but it's early days. Nancy Klimas gets her funding for ME via gulf war syndrome funding sources, and she says that obtaining funding for ME is much more difficult than GWI for various reasons. Partly because the grant givers still don't believe that ME is a serious and severe illness, and so question the need e.g. for expensive methodologies or trials of harsh drugs.

Again I don't believe this, look at Dr. Shungu who got a $2 million grant from NIH because of his good work.

The other thing that was said at P2P is that there just aren't a large number of people doing research on ME/CFS and therefore not a lot of grant proposals. Up until now most young researchers didn't want to start their career doing ME/CFS research because they thought it wouldn't be an easy career path.

I think this will start to change now because of the IOM report.

 

[Nielk]

Exactly! This is exactly what we all said during P2P, why aren't these experts collaborating and pooling resources together to get something meaningful done and really prove if their ideas about this disease and potential treatments really work. We talked extensively about having centers of excellence that are all collaborating and doing clinical studies together and pooling infrastructure and resources.

If they really believe that enteroviruses are the cause of ME/CFS in a significant subset of patients then get your act together and team up with e.g. Dr Montoya who's interested in infectious causes and many others to do a larger scale study and SHOW US SOMETHING.

Dr Chia has been publishing on ME/CFS since the late 90s, come on it's been over 15 years and you can't get your act together enough to do a larger scale study?

CFSAC has recommended to the Secretary of HHS to provide centers of excellence for ME/CFS. Her reply was NO. She said there is no funding for this.

Total yearly expenditures for specific diseases for the NIH get set the prior year. The total for ME/CFS has consistently been set at around 5 million. A tiny fraction of what is set for other similarly burdened diseases.

I get very angry when the burden for this gets turned around and blamed on ME/CFS hard working clinicians. They have overburdened offices, caring for thousands of patients. They can only do so much in solving this dilemma.

It is the burden of HHS to bring relief to millions of disabled Americans. Not the few overburdened, caring clinicians!!!

 

[Bob]

Again I don't believe this, look at Dr. Shungu who got a $2 million grant from NIH because of his good work.

One example doesn't make your point for you. We need to see many-many more examples. Then I'll start to believe it.

 

[leokitten]

CFSAC has recommended to the Secretary of HHS to provide centers of excellence for ME/CFS. Her reply was NO. She said there is no funding for this.

Total yearly expenditures for specific diseases for the NIH get set the prior year. The total for ME/CFS has consistently been set at around 5 million. A tiny fraction of what is set for other similarly burdened diseases.

I get very angry when the burden for this gets turned around and blamed on ME/CFS hard working clinicians. They have overburdened offices, caring for thousands of patients. They can only do so much in solving this dilemma.

It is the burden of HHS to bring relief to millions of disabled Americans. Not the few overburdened, caring clinicians!!!

Well now that the IOM report is smack in the face of HHS, NIH, CDC, FDA, etc lets see how things change. They spent over $1 million for the report and now they have their answers.

I fought very hard during the P2P to show the powers that be at NIH that this is a very real disease. They saw first hand when I talked with them that I'm a scientist and cancer researcher working full time at the NIH and this disease causes me all kinds of problems. They saw that we are not just lazy people wanting disability, I told them I never want to stop working and never want to go on disability, I just want treatment so the symptoms go away and I can have my life back.