i had CFS for years, till they told me it was Hep-C...
Posted on 10/30/2011 6:20:15 PM PDT by Seizethecarp
While the XMRV disappointment concerned a possible cause of ME/CFS, this Rituximab story concerns the possible first ever treatment or cure of the disease for at least some folks.
“Rituximab Basics with Dr. John Sweetenham”
http://www.research1st.com/2011/10/30/rituximab-sweetenham/
“Dr. John Sweetenham: Rituximab works by attaching itself to a particular type of white blood cell known as a B-lymphocyte or B-cell. B-cells have a substance called CD20 on their surface, which is recognized by rituximab. When rituximab “sees” the CD20, it latches onto it and this eventually results in the B-cell being damaged or destroyed.
“Certain types of cancer known as lymphomas are cancers of lymphocytes, most commonly B-cells and have CD20 on their surface. Rituximab has proved to be very effective at treating B-cell lymphomas, either by itself, or when added to chemotherapy.
“Autoimmune diseases such as rheumatoid arthritis occur when the body’s immune system starts to react against its own tissues. When this happens, B-cells are often part of the reason for the tissue damage which occurs. Because rituximab recognizes the B-cells and destroys them, it can prevent them from damaging tissues and therefore control the auto-immune disease.”
I’ve had three sets of Rituxan. I have a different auto-immune disease but also had severe fatigue. It virtually took the fatigue away and significantly improved the muscle issues. It took about 16 wks after the second infusion before I noticed any benefit so don’t be discouraged if you don’t see any improvement right away. It worked so well that I was able to go 15 months in-between treatments.
I have had “crumpled in a heap” ME/CFS for 10 years and after the XMRV virus fiasco it is wonderful to have hope again.
The two Norwegian MD’s who did this study were surprised by a patient like you who was treated for a different condition (cancer) and had an amazing remission of chronic fatigue syndrome symptoms.
The next challenge will be to get MD’s to prescribe and insurance to fund Rituxan trial treatment for ME/CFS in the US.
“Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope”
quote
Norway has never been known for its ME/CFS research but medical breakthroughs aren’t a matter of location; they’re more a function of innovation and attention to detail. Drs. Fluge and Mella apparently have both of these characteristics in spades. A surprising if temporary recovery from CFS that occurred during chemotherapy treatment for cancer caught their eye. Now we know that this has happened many times in the CFS community; the difference, this time, was that it occurred in the presence of two physicians who a) noted it, b) believed in CFS and c) had the determination and ability to carry the project forward in a rather hostile environment.
It wasn’t easy. During an interview in December, Dr. Mella noted that the project was cobbled together using funds they could gather and was done on the side; except for the XMRV finding, CFS researchers have never got much help from the powers that be. The publication of the current paper prompted the Norwegian Directorate of Health, in the first statement of its kind ever from a federal agency, to apologize for the poor treatment that ME patients have received at their hands.
“I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.”
end quote
Wonderful news! Hopefully this will help many people who have real diseases diagnosed as “delusional”.
The lazy slatterns at the new CDC facilty on Atlanta... waiting in Spa Robes will be too busy to actually comprehend this and other reports.
Face it Folks, these Govt Union employees are parasites.
They care nothing about your “parasites”
except to disrupt ,...negate and troll websites to “prove” sufferers to be
mentally incompetant, dysfunctional AND...
Worst of ALL...
Stain their little white Lab coats as they “emerge” from the Mood Room
After a post prandial nap!
Come on..
I dare you!
Ask one of them what the definition of post prandial is!
You likely will be diagnosed with AIDS and we need to fund that better!
I apologize for my /rant!!
This is very important info for all of you CF folks and I Do appreciate that!
I am just so freaking sick of these politically connected MORONS making judgements and classifications of folks who suffer from 21 st man made
diseases
especially when they are cranially/ rectally inverted
and dumber than a post!
God Bless you all!
I pray for the day that you get some “justice”!
i had CFS for years, till they told me it was Hep-C...
The severe fatigue I experience is related to the disease that I have but improvement I had with Rituxan was dramatic. it gave me my life back in many ways.
glad it is working, i did Interferon, TWICE... i'm still C+
These results are consistent with the Chicken Pox virus (aka Varicella Zoster and Herpes Zoster) as a possible cause of ME/CFS. Over-activation of the immune system by in response to that virus could lead to autoimmunity.
I had chemo regimen - Hyper CVAD and Rituxin for my Non-Hodgkins Lymphoma in 2003 ...
Apparently, it worked ...
You've got that right! The LTD insurance companies are especially keen on classifying ME/CFS as a mental health “behavioral” disorder (all in the mind...caused by a self-reinforcing illness belief) so they can cut off your LTD salary replacement payments after two years max.
The medical insurance cos. are petrified that an illness like ME/CFS, currently with NO treatments approved by the FDA, will require an expensive treatment like Rituximab ($18,000/yr for for bi-annual infusion sessions...until it goes off patent in the US in 2015, I read...not sure).
Sorry to hear that. At least you found out what you had and they stopped trying to pump you with antidepressants to “perk you up”!
The jokes about CFS “malingers and insurance fakers” are very cutting. While the XMRV retrovirus thing didn't pan out at least the mockery let up for the past two years. Now ME/CFS sufferers have been spared from having the abuse start up again by this study showing that an autoimmune process in involved.
prayers up for all of us...
Herpes is one of the prime suspects. So is HERV-K18, a human endogenous retrovirus (ancient virus incorporated into the human genome) that could be activated another virus such as Herpes or Mono.
Recent studies show that ME/CFS folks have trouble suppressing many of the viruses previously accumulated in life and frequently test for elevated levels in the blood.
The question is whether the immune dysfunction is the cause of or the response to the elevated viruses in the body and if the immune system is responding to a virus, which one? Is it one we know of or a previously unknown one, as XMRV was suspected of being?
New studies are underway to screen human blood samples for traces of ALL viruses. Detection methods keep improving and so new viruses can be now found the were previously too hard to find.
“prayers up for all of us...”
Thanks, especially for the young who are increasingly being swept into this illness.
I didn’t get it until age 50 when I had my children mostly raised and a corporate insurance policy to live on.
Now there are so many young people, children and teenagers and college students who are coming down with this and mothers of young children. It is tragic.
But now there is hope!
The problem with making a case for the chicken pox virus (V.Z. or H.Z.) as a cause of ME/CFS is that the virus is endemic and infection is lifelong if usually asymptomatic. Most researchers will reject it as unworthy of closer inquiry.
Moreover, blood tests are seen as a poor indicator of V.Z. levels, with cerebrospinal fluid samples seen as required for definitive proof. That is usually avoided since it means imposing the risks and pains of a spinal tap.
Since central nervous system (CNS) involvement is now known to be common in chicken pox (about 40% of all cases), a large proportion of the population must be regarded as susceptible to CNS effects when shingles develops along the same neural pathways. Yet CNS effects are rarely noted in shingles. Might it be that such cases are instead recorded as ME/CFS?
"Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome"
http://www.ncbi.nlm.nih.gov/pubmed/21383843
Abstract
BACKGROUND:
Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue (CFS) are syndromes of unknown etiology. They share features of fatigue and cognitive dysfunction, making it difficult to differentiate them. Unresolved is whether nPTLS is a subset of CFS.
METHODS AND PRINCIPAL FINDINGS:
Pooled cerebrospinal fluid (CSF) samples from nPTLS patients, CFS patients, and healthy volunteers were comprehensively analyzed using high-resolution mass spectrometry (MS), coupled with immunoaffinity depletion methods to reduce protein-masking by abundant proteins. Individual patient and healthy control CSF samples were analyzed directly employing a MS-based label-free quantitative proteomics approach. We found that both groups, and individuals within the groups, could be distinguished from each other and normals based on their specific CSF proteins (p<0.01). CFS (n = 43) had 2,783 non-redundant proteins, nPTLS (n = 25) contained 2,768 proteins, and healthy normals had 2,630 proteins. Preliminary pathway analysis demonstrated that the data could be useful for hypothesis generation on the pathogenetic mechanisms underlying these two related syndromes.
CONCLUSIONS:
nPTLS and CFS have distinguishing CSF protein complements. Each condition has a number of CSF proteins that can be useful in providing candidates for future validation studies and insights on the respective mechanisms of pathogenesis. Distinguishing nPTLS and CFS permits more focused study of each condition, and can lead to novel diagnostics and therapeutic interventions.
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