Rituximab, a Possible XMRV Treatment?

[redo]

Right - it's been published finally

Redo, it does sound as if the ME Association are going to be supportive

(start)
"It's the most encouraging drug result so far in the history of this disease," according to Charles Shepherd, medical adviser to the UK ME Association. "Although it's a small trial, it's produced dramatic results


http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html

Thanks for the link. Saying something when a journalist asks you, is like kicking a ball which has been passed to you (passive approach). What I think they should do is to be active, and use this for what it's worth to steer money away from "ME patients are mental" into something constructive

The big question: is this disease truly autoimmune or are our B-cells infected by a certain virus, say a gammaretrovirus?

I think a RNA-virus is the reason behind the autoimmunity, and that the Rituximab stops the autoimmunity (but not the cause for why the autoimmunity persists without the drug...). Like this. The (previously) latent RNA virus can be triggered by immune suppressive events such as EBV infection, girdia, hard flu, severe stress, HHV6 and other 'triggers', the patients gets ME as a result of a active virus. Stopping the autoimmunity the virus causes, stops the symptoms.

Of course, what I wrote is theory, and not fact. Important to note. :Retro smile:

 

[redo]

I found a statement from the company that makes the medicine about PML risk in RA patients:
"The overall reporting incidence of PML in patients with rheumatoid arthritis receiving Rituxan is rare (3 reports in approximately 100,000 rheumatoid arthritis patients thathave been exposed)."
It's not said that we should take everything which comes from the producer for good fish. But even if it was a hundred times as big of a risk, I would think it would be worth it...

http://www.fda.gov/downloads/Safety...tyAlertsforHumanMedicalProducts/UCM187792.pdf

I think the most fitting safety comparison for ME patients receving Rituximab (RTX) is that of RA patients. Oncological patients do have much more problems with the immune system following infusion (e.g. cytokine storm). Even if the PML risk was higher than reported with RA, even if chances of avoiding it would be 9999 of 10000, than the risk of getting PML would still be less the risk of a woman not surviving a child birth in the US. The chances of survival is in that case 9998 of 10000. Just to put things into perspective...

The risk of still having the torture like condition ME for one more year, if nothing is done, is almost a given.

 

[Tristen]

This significantly strengthens the argument that a subgroup of M.E. sufferers have an autoimmune disease as the NCF has been stating for years. It is a concern that other autoimmune diseases like psoriasis worsened through rituximab treatment as my family has a history of autoimmune diseases including serious ones like Walter Payton's disease. In richvank's videos he mentions worsening of some autoimmune diseases while on his protocol as well.

That's the first I've heard of that. Which autoimmune diseases? Do they improve after stopping the protocol? Does he say why improving methylation would exacerbate autoimmune disease? Can you point me to the source of this information (text better than video for me). Thanx

Me too on being in the autoimmune subset. In my case, autoimmunity appears to be more a component, rather than cause of the disease.

 

[richvank]

[/B]

That's the first I've heard of that. Which autoimmune diseases? Do they improve after stopping the protocol? Does he say why improving methylation would exacerbate autoimmune disease? Can you point me to the source of this information (text better than video for me). Thanx

Me too on being in the autoimmune subset. In my case, autoimmunity appears to be more a component, rather than cause of the disease.

Hi, Tristen.

It comes from an article I posted to several of the internet groups in July, 2007, after the first 6 months of experience with the simplified protocol by people mostly on the ProHealth board.
The fact that some serious adverse effects were experienced by a few people is one of the reasons I believe that anyone who is on a methylation protocol should be under the care of a licensed physian.

Here is the last part of the article:

"Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and causeeffect relationships are difficult to determine exactly from the available information, Im hopeful that it will be helpful to clinicians and other PWCs:

1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . . This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest. This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

3. A third person had a history of autoimmune disease, including Sjogrens syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc. She also experienced a severe flare of Sjogrens syndrome, with very dry mouth, dry eyes, and severe eye pain. Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with vomiting, vise-like headache, and shaking. She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogrens syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction."

I might add that some of these people went back on the methylation treatment after they were able to resolve some issues, because they had experienced some benefit (together with the adverse effects). However, I don't think the people with the autoimmune issues went back on the treatment.

Best regards,

Rich

 

[Tristen]

Rich, it seems to me that most of this could easily be attributed to the usual myriad of symptoms and changes we experience with this bizarre disease, and probably unrelated to the Protocol.

I've been on the protocol for 1.5 years now and have only experienced a gradual improvement, and nothing that would seem a reaction to the supplements. In the last 3-4 months, I've been having a fairly rapid progression of some type of arthritic syndrome, affecting certain joints and tendons, that I'm sure is autoimmune. Anyhow, I doubt it's connected with the protocol. But this is why I was asking. Thank you for responding.

 

[fla]

That's the first I've heard of that. Which autoimmune diseases? Do they improve after stopping the protocol? Does he say why improving methylation would exacerbate autoimmune disease? Can you point me to the source of this information (text better than video for me).

I heard it from the third video here at timecode 1h04m20s.