Lymphoma drug Rituximab for MEcfs

Dr. Øystein Fluge is Chief Physician in the Department of Oncology at Haukeland University Hospital, University of Bergen, Norway.  He received his medical degree in 1988 from the University of Bergen and has specialized in oncology since 2004.  He has conducted research at the Surgical Institute and Department of Molecular Biology, University of Bergen and has been funded as a Research Fellow by the Norwegian Cancer Society.

In 2004, Dr. Fluge and his colleague, Dr. Olav Mella, a neurologist at the same institution, noticed that a patient’s ME/CFS symptoms improved substantially while undergoing chemotherapy treatment for a concurrent diagnosis of lymphoma.  This was followed by a pilot study in 2009 with positive results. In 2011, Dr. Fluge, Dr. Mella, and their colleagues published a randomized double-blind placebo-controlled trial of rituximab in 30 ME/CFS patients demonstrating that  two-thirds of the intervention group experienced moderate to major improvements in their ME/CFS symptoms. For a medical condition with no disease-modifying treatments, this was a ground-breaking study. Currently, they are in the midst of attempting to replicate their results in a larger Phase III multi-center study in Norway.

The above was Dr Fluge's bio from the recent IACFS/ME Conference outline.

I was just wondering if you've got any of Dad's cancer/immune suppression/B cell depletion drugs still lying around?  I guess you think I'm joking.  Which drug ending in mab did he use?  It's just that by the time they figure out how to cure this thing and release the drug to the impoverished masses via Medicare, I could be dead.

Went to Coles for the first time in ages today.  I've been ordering groceries online since I couldn't walk straight, was dizzy and my heart was pounding after moving my body, even lifting an arm.  I did use the new wheelie walker at home but at the Golden Beach shops/doctors I only used a walking stick or just went ultra slow.  I only went out when I had no choice. I've had problems with breathing too as you know.  The first three things have just vanished more or less overnight when I started taking Jarrow Formula's sublingual Methyl B-12 which is not the same thing as what you can buy at the chemist because of the type of B12.  I have been taking it for 2 weeks I suppose and I am sure my brain is working a bit better too and I'm not falling asleep all the time. I do not know how much that 2 weeks has altered my serum B12.  I guess it may not show up as "Low" on the blood test I requested on Thursday but I am heading to another new doctor next week to find out.

I have read that people are getting neurological (including dementia) symptoms from low B12 even before it reaches the cut-off point for too low that the pathology labs set as standard.  I wish they would do something about that because the doctors set their standard by the pathology labs.  My doctor recently ran some blood tests but they were the same old ones and even if anything was slightly raised I would not be told.  I just got the standard reply "no action necessary".  It was hard enough to get an actual figure for my blood glucose 3 month average which was a well-controlled 6.2, one point up from last time.  What I mean to say is that if low B12 is going to be the explanation for my decline this year, then it will not be forthcoming from my regular doctor.  I'm doing this myself.  It also ties in with my MTHFR gene mutations.

We are the Pioneers but we won't be cured

The older ones of us with little-understood neuroimmune diseases like Myalgic encephalitis had some hope last year of a cure when XMRV was thought to be the cause and anti-retrovirals the potential cure.  However we have to face reality.  The potential treatment called Rituxan is the latest hope on the horizon but we are privileged to have our fellow sufferer Dr Jamie Deckoff-Jones to tell it like it is.

If Rituxan works for ME/CFS, that’s 4 million people in the US alone who need a drug that can cost upwards of $20,000 per round of treatment, including the high level of care needed to administer safely; it probably will need to be given twice a year, must be continued forever and carries a significant risk with each infusion. For fun, that would be $80 trillion dollars per year for us all to get treated. The drug is apparently much cheaper in the UK; it is going out of patent in 2015, so it will be cheaper in the US as well, but that also means there will be no funds to study it for us. The point is, it is not a sustainable model, this drug or another expensive palliative treatment. Nor would antiretrovirals have been had they worked very well. Too many people. And it’s not just this cohort, but several huge cohorts. Wouldn’t it make more sense at this point to figure out why so many people are getting sick with immunological diseases, rather than blindly killing everybody’s B cells? 

Read More from Jamie's blog

In addition to the cost issue, there is reaction to the treatment itself.  anti-retrovirals cause terrible chaos in the body as the battle against the retrovirus rages and Rituximab I see is a drug they use to treat Lymphoma (non-Hodgins) just like Dad had.  In other words it is chemotherapy.  There have been studies that reveal anomolies with our B-cells, I can't remember what - elevated possibly - so there is a link with Lymphoma already hypothesized and statistically there is a connection with ME in some studies (but I can't remember what).  Anyway, the point is that the treatment is likely to make us much sicker than we already are.  It is the same with Lyme Disease.  The antibiotics stir it up and savvy doctors put their patients on Doxycycline for a month before they are even tested for Lyme so that it is more likely to show up in the $3000 blood tests.

I was sorry to read that Patrick Wylie Kelly was lost just in the last few days to Lyme, pain and depression.  And I see too via Monique Martens that the political climate surrounding Lyme disease is in turmoil in Belgium as well as the USA.  

There have been a couple more TV segments recently about Lyme disease in young children.  It is not far off becoming a political issue here. It is now being passed on to offspring via their parents - sexually. I know that one of the STD's is also a spirochete (type of organism). 

An online friend's daughter who got Lyme on a Girl Guide camp is now being distressed by the Guide movement's warning to her not to name them in any future TV episodes.  She has worked for 4 years to become a Queen's Guide and is only a few weeks away from that while the very movement she loves is now treating her as an enemy.  The poor kid, as if she hasn't got enough to deal with.

I have also heard of someone's hubby having to now report any tick bites on the job.  Time, date etc.  

I am feeling somewhat better today :)  

I'd like to base my treatment on biochemical testing

This looks like a good idea for anyone with needle phobia, for getting blood drawn, getting tattoos