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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Is Anyone Else Scared of Rituxan?

funkyqueen

funkyqueen

Senior Member
Messages
123
Location
South of France
leokitten said:
@funkyqueen search the PR forums for the word "Daxor" and you will find my posts where I answer questions about the test and machine for people, I think you will find all the information your are interested in.
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Thanks, Leokitten ;-)

Sushi said:
Knowing that @funkyqueen's first language is not English and that she is new to the forum and may not know how to search, I'll give a link.
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Well, it's time to try what you explain me, Sushi ;-) :p (mutli-quotes )
No, i'm not really new on PR, but you're right when you said it's better to give me the link :p Thanks !
 
leokitten

leokitten

Senior Member
Messages
1,595
Location
U.S.
Jonathan Edwards said:
For some autoimmune diseases rituximab seems to produce long term remission in a proportion of cases. The idea is that the autoantibodies are produced by an abnormal feedback loop and if you take enough away to break the loop then your immune system is back to normal. It does not happen for rheumatoid arthritis but it probably does for immune thrombocytopenia.

I do not think Fluge and Mella are suggesting that the vascular dysfunction in ME is vasculitis. That is something different. Autoimmune vasculitis of both primary and secondary forms can respond to rituximab but that may not be relevant to ME.
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@Jonathan Edwards if possible could you give me some more info on what Fluge and Mella presented and what type of autoimmune process they think is going on causing vascular dysfunction?

I had read the Newton et al paper on ME and endothelial dysfunction a long while back and it struck a chord with me because my continuing symptoms and physical changes from the disease always pointed to some kind of severe vascular problem. But the scientist in me said since it was a one off and no one else was talking about this then it needed to be reproduced and validated.

Then late last year or early this year when I read Fluge and Mella were also seeing serious vascular dysfunction in their patients and it was a big enough phenomenon that they were going to do a substudy on this in the big RituxME trial I said this is real this is what is going on with us, at least a subset of us.

And the autoimmune vascular dysfunction theory can explain all the symptoms of ME.
 
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dannybex

dannybex

Senior Member
Messages
3,565
Location
Seattle
leokitten said:
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.
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Unfortunately I'm not holding my breath on this one either. They spent a million on a report that the leading ME/CFS experts and clinicians in the US told them wasn't necessary, advice that was ignored.

leokitten said:
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.
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While I certainly appreciate your efforts and mean absolutely no disrespect when I say this, you're one of dozens, if not hundreds of patients who have talked with government bureaucrats over the last 30 years, to no avail.

The late Thomas Hennessy Jr., the man who started the May 12th Awareness day worked probably harder than anyone for 25+ years to bring attention to the seriousness of our illness and to get the name changed to Myalgic Encephalomyelitis, to no avail. He can be seen here (well worth watching) and tells his story in an interview w/Cort Johnson from 2008 here:

http://phoenixrising.me/interviews-3/10317-2

Also, the fact that you're still working is probably a strike against you, as although many if not most would never tell you this to your face, I wouldn't be surprised if behind your back they conclude that it must not be that serious because you're still able to work.

Unfortunately in our celebrity-driven culture, I doubt anything will change until some very famous and beloved movie or television star, now ravaged by ME/CFS, comes forward (like Michael J. Fox did w/Parkinson's) and speaks to Congress in front of a national audience. Then maybe things will change.

But I thank you for trying to make a difference.
 
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V

Valentijn

Senior Member
Messages
15,786
leokitten said:
You just took my statement out of context, in the past yes I know there were definitely some government institutes and centers that didn't believe in ME research, but I was referring to TODAY and TOMORROW, and I stand by my statement I don't believe the NIH is against ME research now.
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"Yesterday" and prior, they did not believe in biomedical ME research, and have generally opposed it. While we can't guess what they'll do "tomorrow", they seem to be doing an awful lot of nothing "today", and certainly are not yet taking any steps to rectify previous errors.

Based on past experience, it's still likely that nothing will happen. CFSAC and a great many advocates and some high quality researchers have been pushing for a better definition and more funding for years, if not decades, and have been repeatedly shot down. Is HHS ready to change its tune? Maybe, but even in that event it's still likely we'll have to fight continuously to get what we need and to keep them on track.

The CDC and NIH have worked very hard over the decades to earn the distrust of ME patients. They're going to have to work just as hard to remedy the situation. If they even want to.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
leokitten said:
@Jonathan Edwards if possible could you give me some more info on what Fluge and Mella presented and what type of autoimmune process they think is going on causing vascular dysfunction?

I had read the Newton et al paper on ME and endothelial dysfunction a long while back and it struck a chord with me because my continuing symptoms and physical changes from the disease always pointed to some kind of severe vascular problem. But the scientist in me said since it was a one off and no one else was talking about this then it needed to be reproduced and validated.

Then late last year or early this year when I read Fluge and Mella were also seeing serious vascular dysfunction in their patients and it was a big enough phenomenon that they were going to do a substudy on this in the big RituxME trial I said this is real this is what is going on with us, at least a subset of us.

And the autoimmune vascular dysfunction theory can explain all the symptoms of ME.
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I am afraid that I cannot give an accurate account of Oystein Fluge's hypothesis. This year they said relatively little about it other than mentioning that it was being studied in the phase II trial. They have also indicated that they have replicated the altered flow mediated dilatation response that the Newton/Belch team found. Oystein thinks that nitric oxide is involved in the pathway but I am not sure of further details.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
leokitten said: ↑
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.


dannybex said:
Unfortunately I'm not holding my breath on this one either. They spent a million on a report that the leading ME/CFS experts and clinicians in the US told them wasn't necessary, advice that was ignored.
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I think it is worth remembering that the NIH have recently provided $1.8M to support the ME Biobank in London. It is worth pondering why they should support a very simple basic project of that sort over here. To my mind it is absolutely the right priority, to allow rigorous replication of results on blood samples collected in a systematic way.

At the IiME workshop my impression was that the international gathering of scientists thought the IoM had done a good job. There may have been scepticism about the need for such a report beforehand but the product seems to have been worth the cost. The new SEID name was considered to be something of an irrelevance but other aspects were welcomed. There was also a consensus that the research field is changing very rapidly for the better. People like the Columbia team have had trouble raising funds for projects but everyone in science has trouble raising funds and there was a clear sense that people were pushing ahead with projects regardless, on the assumption that the money will come in somehow, which is the way things are always done with emerging projects.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
lansbergen said:
Can that give a waterhead feeling?
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I doubt it. It will either produce focal signs like paralysis of an arm and leg or loss of speech or raised intracranial pressure, which tends to produce headache or sleepiness and then coma. Brain vasculitis tends to produce pretty dramatic neurology.
 
L

lansbergen

Senior Member
Messages
2,512
Jonathan Edwards said:
I doubt it. It will either produce focal signs like paralysis of an arm and leg or loss of speech or raised intracranial pressure, which tends to produce headache or sleepiness and then coma. Brain vasculitis tends to produce pretty dramatic neurology.
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And when it happens in the meninges?
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Jenny said:
I had that ten years ago. Diagnosed as sub arachnoid haemorrhage. I was given nimodipine which hugely improved my ME symptoms. Could this be taken long term?
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Nimodipine is used to inhibit the vasospasm of subarachnoid haemorrhage and I doubt it would be relevant long term in that context. As for an effect on ME symptoms I really don't know. I think there may be rather little data on long term usage since although it was originally designed for hypertension it is not normally used for that.
 
U

user9876

Senior Member
Messages
4,556
leokitten said:
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.
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To get a grant proposal backed by small scale studies someone needs to fund the small scale studies. I think there is a very big difference between an organization that would take and fund grant proposals and one that has a strategy to fill gaps by ensuring seed funding for small studies and ensuring collaborations and the presence of the big university departments researching an area.

It seems to me the NIH can say we would support high quality research proposals but when they get them they are unable to tackle poor quality reviewing issues. But they don't seem to have a strategy for getting more high quality proposals in an under-researched area. In some areas of non-medical government funding research councils try to do more to ensure gaps are being covered.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
user9876 said:
To get a grant proposal backed by small scale studies someone needs to fund the small scale studies. I think there is a very big difference between an organization that would take and fund grant proposals and one that has a strategy to fill gaps by ensuring seed funding for small studies and ensuring collaborations and the presence of the big university departments researching an area.

It seems to me the NIH can say we would support high quality research proposals but when they get them they are unable to tackle poor quality reviewing issues. But they don't seem to have a strategy for getting more high quality proposals in an under-researched area. In some areas of non-medical government funding research councils try to do more to ensure gaps are being covered.
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I very much agree with that. But it is interesting that the best example of the sort of seed funding we think we need is coming from NIH and going to the UK ME Biobank. Of course there may be no strategy here - it may have more to do with UK researchers skilfully playing a zombie system. Still, at least the opportunity seems to be there.
 
leokitten

leokitten

Senior Member
Messages
1,595
Location
U.S.
user9876 said:
To get a grant proposal backed by small scale studies someone needs to fund the small scale studies. I think there is a very big difference between an organization that would take and fund grant proposals and one that has a strategy to fill gaps by ensuring seed funding for small studies and ensuring collaborations and the presence of the big university departments researching an area.

It seems to me the NIH can say we would support high quality research proposals but when they get them they are unable to tackle poor quality reviewing issues. But they don't seem to have a strategy for getting more high quality proposals in an under-researched area. In some areas of non-medical government funding research councils try to do more to ensure gaps are being covered.
Click to expand...

I think you are overstating what is needed for small scale studies. Look for example at at Shungu and Natelson's work:

http://www.ncbi.nlm.nih.gov/m/pubmed/?term=shungu+chronic+fatigue+syndrome

They did only the first two papers in order to then get the $2 million grant from NIH, I believe the 3rd paper is the first output from the NIH grant. The first two papers have only 15 patients in each group so as small as you can get.
 
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