Øystein Fluge and Olav Mella interviewed on BBC Radio

[acer2000]

Very interesting. I hope they can zero in on what type of autoantibodies are having the effect, if they can. Its my understanding that this hasn't been eludicated yet.

 

[Never Give Up]

Symptoms I cannot really explain with their idea: flu like symptoms, sensory overload (but you have that in migraines, too, hm), sleep disruption, delayed PEM...

Here's a little anecdotal clue for you, my son's POTS is starting to respond to Florinef. He has gone from living in darkness to having the blinds and windows open most of the time, from going to bed at 2:00-3:00AM to going to bed at 10:00-11:00PM, he is also regulating his body temperature better. His biggest improvement has been in his cognitive function and some other horrible sensations that he cannot even describe. I'm guessing it's due to increased blood volume and a related increase in perfusion to the hypothalamus. On the other hand, maybe the florinef is filling some void in the HPA axis and making everything work better.

 

[Never Give Up]

Thank you for posting this! I also enjoyed hearing these researchers speak about their findings and new efforts. I'm just beginning to took at Rituximab. A consistent 2/3 response rate is very encouraging, even though the sample size is small. One has to start somewhere, right?

Here's another little bit of anecdotal info, my son's uncle developed B cell lymphoma in his late 40's, the same disease found to be more prevalent in older persons with ME, and the disease these 2 doctors were treating in an ME patient when they noticed the effects of Rituximab on his ME. Could be coincidental, could be a clue...

 

[Forbin]

[Regarding possible vascular involvement in ME, I mentioned the below on another thread a couple of months ago.]

In 1975, there was an outbreak of cases resembling ME/cfs at Mercy San Juan Hospital in Carmichael, California, a suburb of Sacramento. These cases, however, were distinguished by severe vascular involvement, leading investigator Erich D. Ryll, M.D. to term the illness "Infectious Venulitis."

The CDC investigated and documented 45 cases. The largest percentage of cases by occupation were among ICU nurses. Four cases were non-hospital contacts of employees. One case was an ICU patient. Additional cases were reported later.

Below is a link to Dr. Ryll's 30-year-follow-up report on this outbreak:

http://www.iacfsme.org/LinkClick.aspx?fileticket=DFTt0/5WSAU=&tabid=477

INTRODUCTION
An infectious epidemic outbreak, characterized by acute onset of severe influenza like symptoms and accompanied by severe venous involvement, occurred in 1975 in a community hospital in Carmichael, a suburb of Sacramento, CA. Vascular features ranged from spontaneous bruising with numbness, tingling, and burning to painfully swollen veins. The severity of disease appeared to be associated with the extent of vascular sequelae. The hallmark symptom of painful veins appeared to be similar but more severe and extensive than the Epidemic Phlebodynia documented in three other hospital epidemics reported in 1953, 1957, and 1965 (1-3). Headaches, sore throat, fever, dizziness, runny nose, nausea and vomiting, severe exhaustion and weakness, severe generalized pain, disturbances of cognition/mentation, and nervous system abnormalities resembled Epidemic Neuromyasthenia (ENM), Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). Today these illnesses are thought to represent the same and/or a spectrum of related disease states.

In summary, while the outbreak had many features resembling the documented diseases described in this report, the “infectious venulitis”, severity of pain and symptoms, and long-term disability suggest that it may be a more virulent form of these illnesses or that the outbreak may represent a new disease entity. Indeed, the observed vasculopathy, severe generalized pain, dementia, severe neurologic findings, and peri-articular disease may suggest that this illness is disparate from CFS. Regardless, the information gleaned from the 1975 outbreak will add to the growing body of literature to an illness that has long been trivialized despite its devastating sequelae.

[Bolding mine.]

 

[Jonathan Edwards]

But then, every responder and every non-responder is providing clues to the astute as of why one is responding or not. And we have astute researchers.

One question for @Jonathan Edwards if I may, would Cyclophosphamide kill plasma cells and could that make a difference between responding and non-responding?

And for @deleder2k do you know if non-responders to Rituximab have been given Cyclo?

Cyclo can kill plasma cells but it very much depends on the dose. To kill significant numbers you probably need very high doses (10gm) of the sort used prior to stem cell rescue.

 

[deleder2k]

But then, every responder and every non-responder is providing clues to the astute as of why one is responding or not. And we have astute researchers.


And for @deleder2k do you know if non-responders to Rituximab have been given Cyclo?

I think 1/3 of the patients in the new cyclo trial are non responders to RTX. We will have to wait and see.

 

[aimossy]

@deleder2k
Hi, any ideas about time frame for when this open label ritux publishing might be out? I know it is a long shot but just in case there is a general time frame.

 

[user9876]

I'm not keen on Fluge and Mella's hypothesis re blood vessels, but I'm open to possibilities, and the main thing is whether the treatment works or not. They must have their reasons for the hypothesis, and I can see how autoantibodies that affect blood vessels could potentially induce brain fog and neurological symptoms, but I'm struggling to see how it could invoke flu-like and other immunological symptoms, unless a lack of blood flow to regions of the brain (e.g. pituitary/hypothalamus) might interfere with immunological function.

I wonder if that is why ME is so hard to explain. If something is affecting the way the brain is working on some of the basic body control systems such as the immune system and hormones then I assume this would cause a large range of secondary symptoms that help hide the cause.

 

[rosamary]

NERVES IN THE NOSE.

There was a programme on the radio recently which mentioned some nerves in the nose which can cause a variety of symptoms if they are malfunctioning.

If they were affected by a virus , could they cause some of the brain fog, cognitive dysfunction etc etc?

I think they can affect right/left handedness too.

I know this thread may be the wrong place to put this and I am a bit vague but does anyone have any thoughts.

 

[deleder2k]

@deleder2k
Hi, any ideas about time frame for when this open label ritux publishing might be out? I know it is a long shot but just in case there is a general time frame.

The study has been sent in to PLOS ONE for approval. I don't know how long time that takes. Maybe they have some comments about that needs attention. Will probably not be many months though, but I really don't know.

From the last study on PLOS ONE: Received: June 28, 2011; Accepted: September 25, 2011; Published: October 19, 2011

 

[aimossy]

Thanks @deleder2k !

 

[Sidereal]

I am very impressed by how thoughtful and cautious they are.

 

[aimossy]

True humane professionals with brilliant ethics. They could have walked away easily from this - but they didn't.

 

[aimossy]

@Sasha and anyone else who needs a transcription. Some kind person did one.

https://drive.google.com/file/d/0B-NT-7M70igucHpIUlRMbkhraWs/view?usp=sharing

 

[Marky90]

Does anybody know if theres any pattern to who responds to Rituximab based on onset? I had a sudden onset (not viral) after football training, so i fit the autoimmune vascular thesis..

 

[lansbergen]

NERVES IN THE NOSE.

There was a programme on the radio recently which mentioned some nerves in the nose which can cause a variety of symptoms if they are malfunctioning.

If they were affected by a virus , could they cause some of the brain fog, cognitive dysfunction etc etc?

Some nerves in the nose have an open connection with the brain.

 

[mango]

the radio program is archived for only 30 days on the web, so i made a recording of just the interview part (8:30 minutes, .mp3), and uploaded a copy here:
http://www63.zippyshare.com/v/xcD7k2Dj/file.html

 

[rosamary]

Some nerves in the nose have an open connection with the brain.

Thank you. I'll see if I can find out more by doing some googling. (Sorry if I seem to be ignoring the topic. It's just that this reminded me of this)

 

[anniekim]

Transcript https://drive.google.com/file/d/0B-NT-7M70igucHpIUlRMbkhraWs/view?pli=1

 

[nandixon]

Oystein thinks some patients may have autoantibodies targeting molecules involved in fine regulation of blood flow - I think partly in relation to OI but also brain fog and 'feeling as if running a marathon'. He has been interested in nitric oxide but I do not think he would want to predict a precise target molecule.

Professor Edwards, mind if I ask, what are some of the challenges involved in trying to identify an autoantibody in this situation?

Is it necessary to have a good idea of the target of the autoantibody from the start, or does that not factor in?

I guess they'd need to do some sort of pooling of sera from the rituximab responders. Is obtaining enough of a potential autoantibody for analysis difficult?

I'm basically wondering why it's taken so long to find the pathogenic autoantibody(ies) in ME/CFS, if one exists - which I guess it likely will if the study results continue to hold up. Thank you.