Is Anyone Else Scared of Rituxan?

[Sasha]

I have just been telephoned by a high powered biomedical science reporter (fresh off a piece for Nature she said) who wanted to ask me about the 'turning point that is occurring in ME/CFS in terms of research'. ME is actually getting noticed and I have reason to think that PR is relevant to that.

Very exciting!

This year has definitely felt like one good thing after another. It feels as though we've got some real momentum, as though we've crossed a watershed.

 

[heapsreal]

It was mentioned recently in this thread that PR is well known by many health professions. If a dr decides to look up anything on cfsme and googles it, the first page of hits he will get a link to PR or if they search rituximab or antivirals in cfs, they will find this site. So information and understanding is slowly coming out with the help of phoenix rising.

I also hope they read past all the science of cfsme and also look at the personal struggles many of us have. Although it can be hard to tell as many articulate their thoughts and opinions well online compared to face to face communications when our cognitive issues are a lot more apparent.

Cheers

I had to check but if one googles rituximab or antivirals with cfs PR is on page one. I'm guessing many cfs treatments when googled with cfs in the search engine will have PR site on first page. Posting here on PR is good advocacy for us even if we don't get immediate feedback other than fellow members, but we are putting a lot of information out there for medicos to use.

 

[Kati]

Please do not be irked, @voner.

It is easy to get the tone wrong and I was not implying 'you patients should do this' so much as 'we can do this and it might actually work'.

A few days ago I mentioned that I was amazed to find at a conference on consciousness that one of the key speakers was a researcher on ME/CFS. Today was much the same.

Please tell us more about the conference on 'consciousness'. i am curious about that.

 

[Jonathan Edwards]

Please tell us more about the conference on 'consciousness'. i am curious about that.

That could take a long time! It was one of a series of annual meetings called 'Towards a Science of Consciousness'. It has all sorts of stuff of very variable quality but there is some good science on things like the mechanisms of anaesthesia. It looks as if this may have to do with fine tuning of the structure of microtubules - which form the rigid skeleton of nerve cell processes. The microtubule protein Tau gets lost and forms tangles in Alzheimer's. Parkinson's also involves a problem with a related protein. It may be that anaesthetics and fever 'de-tune' the microtubules so that you cannot think coherently and consciously. I guess it is possible that brain fog is a microtubule problem too.

 

[Kati]

That could take a long time! It was one of a series of annual meetings called 'Towards a Science of Consciousness'. It has all sorts of stuff of very variable quality but there is some good science on things like the mechanisms of anaesthesia. It looks as if this may have to do with fine tuning of the structure of microtubules - which form the rigid skeleton of nerve cell processes. The microtubule protein Tau gets lost and forms tangles in Alzheimer's. Parkinson's also involves a problem with a related protein. It may be that anaesthetics and fever 'de-tune' the microtubules so that you cannot think coherently and consciously. I guess it is possible that brain fog is a microtubule problem too.

Ahhh! Completely medical, nothing esoteric!!! Phew!

Since you are speaking of Alzeimer, could you discuss the results from the spanish study which has used mimantime for fibromyalgia? (Of course I am off-topic and there is a thread on that in the 'Other news and research'.

But I am awefully curious to see who exactly was there at that conference!!! You mentioned a ME dr.

 

[Jonathan Edwards]

Ahhh! Completely medical, nothing esoteric!!! Phew!

Since you are speaking of Alzeimer, could you discuss the results from the spanish study which has used mimantime for fibromyalgia? (Of course I am off-topic and there is a thread on that in the 'Other news and research'.

But I am awefully curious to see who exactly was there at that conference!!! You mentioned a ME dr.

I have to pass on mimantime - never heard of it.

The guy working on ME is called Travis Craddock. I think he is linked to Broderick in Alberta?

 

[Kati]

I have to pass on mimantime - never heard of it.

The guy working on ME is called Travis Craddock. I think he is linked to Broderick in Alberta?

Never heard of his name. And I am one province away. These Alberta researchers have the potential to be our wild card. I hear there was one at the invest in Me event, not sure if the same fella.

It sounds like Dr Broderick convinced him to move closer to Nova. His CV here:
http://psychology.nova.edu/common-pdf/faculty/craddock_cv.pdf

 

[Snow Leopard]

The guy working on ME is called Travis Craddock. I think he is linked to Broderick in Alberta?

Seems to be. Interesting that he comes from a physics background.
http://www.brodericklab.ualberta.ca...ciatesPostdoctoralFellows/TravisCraddock.aspx

Some research:
Systems biology of complex symptom profiles: capturing interactivity across behavior, brain and immune regulation.
Broderick G1, Craddock TJ.
http://www.ncbi.nlm.nih.gov/pubmed/23022717

A role for homeostatic drive in the perpetuation of complex chronic illness: Gulf War Illness and chronic fatigue syndrome.
Craddock TJ1, Fritsch P2, Rice MA Jr3, del Rosario RM3, Miller DB4, Fletcher MA5, Klimas NG6, Broderick G7.
http://www.ncbi.nlm.nih.gov/pubmed/24416298 (I don't think much of this hypothesis, to be frank...)

 

[heapsreal]

Ahhh! Completely medical, nothing esoteric!!! Phew!

Since you are speaking of Alzeimer, could you discuss the results from the spanish study which has used mimantime for fibromyalgia? (Of course I am off-topic and there is a thread on that in the 'Other news and research'.

But I am awefully curious to see who exactly was there at that conference!!! You mentioned a ME dr.

I think its supose to be spelt memantine. Commonly used in neurological conditions and is an nmda antagonist and is said to help lower the cytokine tnf alpha.