• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is ME/CFS a chronic pre-cancer state?

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series

This is a very small study (only 3 patients!) in which there was marked improvement with rituximab, a drug normally used to treat Hodgkin's lymphoma. In light of what Dr. Mikovits is finding in the Incline Village cohort, and that I've heard some of them have been responding favorably to various cancer drugs, it made me wonder if, at least in a sub-group of ME/CFS patients, the disease is a chronic pre-cancer state. Or rather, the immune defect is allowing a viral load that lays the foundation for cancer.

Maybe I'm being too simplistic in looking at this study and Dr. Mikovits's work -- or maybe just stating the simply obvious. But it seems like it would change the way we look at the disease and cancer.
 

Cort

Phoenix Rising Founder
what a fascinating little study that was. I think rituximab and other drugs like it are exactly what Annette Whittemore was thinking of when she talked about going unusual drugs that fit different patients physiological profiles. This is what I think she's talking about when she talks about translational medicine; taking scads of gene expression and other tests that illuminate problems at a very basic level and devising a treatment plan based on that rather than the fact that one has chronic fatigue syndrome or something like that.

If your immune tests suggest you have a cancer profile then you try anti-cancer drugs designed to fix that problem. I just think they're looking more closely than anyone else.

I imagine they were all over those results and I hope theyre in contact with those researchers.
 
T

tag

Guest
Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series

This is a very small study (only 3 patients!) in which there was marked improvement with rituximab, a drug normally used to treat Hodgkin's lymphoma. In light of what Dr. Mikovits is finding in the Incline Village cohort, and that I've heard some of them have been responding favorably to various cancer drugs, it made me wonder if, at least in a sub-group of ME/CFS patients, the disease is a chronic pre-cancer state. Or rather, the immune defect is allowing a viral load that lays the foundation for cancer.

Maybe I'm being too simplistic in looking at this study and Dr. Mikovits's work -- or maybe just stating the simply obvious. But it seems like it would change the way we look at the disease and cancer.

Michelle,

I took Methotrexate for 7 1/2 years. Methotrexate is an anticancer drug which is also used for severe autoimmune cases (I have several). I felt much
better for the 7 1/2 years while I took it, but, Methotrexate does not discriminate - it wipes out all types of antibodies. It drastically reduced my autoimmune antibodies but it also reduced antibodies for all types of infectious organisms. My Th1 system was already depressed. I think my microbes are more active because of the Methotrexate. (The right hand giveth, the left hand taketh away!!)

If you are concerned about cancer (you are not alone in your concern), read up on chelation therapy. My sources have revealed that chelation dramatically reduces the incidence of cancer if the chelation involves at least 30 treatments and PRECEDES the onset of cancer. If cancer is already in progress, chelation has no effect on it. It is believed that chelation therapy is very effective way to remove free radicals, which are believed to be cancer promoting.

TAG
 
Messages
5
Dr. Chia

I remember reading, perhaps on Cort's site, that Dr. Chia said his subset (at least) had a 50,000 greater chance of obtaining Thyroid cancer than the general population. 50,000 is a huge number and I wonder where he got his statistics from.

The scary part is he not the kind of person to make sensational statements just to make them. He must have some data, perhaps next time I see him in November I'll ask where that number came from.

Dr. Chia now has a waiting list of 5-6 months, it's seems these fatiguing type illnesses like CFS/ME and Lyme etc. are on the rise.
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
Or maybe Dr Chia is now so well known that more people are seeking him out?
Especially as he has a particular therapy worked out.

Thanks for the info Superuser..:) I've posted recently about my experience with Prof De Meirleir with a profile of what my particular ME'CFS illness looks like. Would be good to see some others do the same. Just a thought. Cheers...:)
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series

This is a very small study (only 3 patients!) in which there was marked improvement with rituximab, a drug normally used to treat Hodgkin's lymphoma. In light of what Dr. Mikovits is finding in the Incline Village cohort, and that I've heard some of them have been responding favorably to various cancer drugs, it made me wonder if, at least in a sub-group of ME/CFS patients, the disease is a chronic pre-cancer state. Or rather, the immune defect is allowing a viral load that lays the foundation for cancer.

Maybe I'm being too simplistic in looking at this study and Dr. Mikovits's work -- or maybe just stating the simply obvious. But it seems like it would change the way we look at the disease and cancer.


Hi Michelle,

So many things keep turning up. Currently b12 deficiencies are being investigated as causing the DNA replication errors that turn a normal cell into cancer cells in quite a few different cancers. It also causes cell changes on the cervix that show up on a PAP smear. There are so many things that keep pointing at the lack of active b12s. Of course b12 deficiencies also causes immune defects. Good luck.
 

klutzo

Senior Member
Messages
564
Location
Florida
Thyroid Cancer

Hi Superuser,
I don't know where I read it, but long ago I read that CFS patients are 40,000 times more likely to get thyroid cancer than the general population. I also read that this is not as scary as it sounds, for two reasons. One is that thyroid cancer is very rare, and the second is that it is almost always curable. The actual incidence of thryoid cancer for CFS works out to about a 7% chance. I may be wrong, but think I got this info from Dr. Byron Hyde's 25 yr. retrospective study on his own CFS patients.

I also read something that included the other cancers we are at high risk for, and I think I remember most of them. Some are quite rare. I have included what little info I remember about the others below:

1. Non-Hodgkins Lymphoma - 40 times the risk
2. Burkett's Lymphoma - rare illness of African origin
3. Myoglioblastoma - a rapidly fatal brain tumor
4. Salivary gland cancer - I actually had an incidence of this in the FMS support group I ran for ten years. The poor woman had to have all her teeth pulled before they could start the treatment.

I am pretty sure this info was based on studying the Incline Village patients. I also remember that the article said the Non-Hodgkins Lymphoma is the biggest risk of the bunch, since that is already at epidemic levels, so 40 times the normal risk is pretty high.

As you may know, Non-Hodgkins Lymphoma is widely considered to be an environmental cancer, so I wonder what that says, if anything, about CFS. I do know one other big risk factor for getting it is the use of dark brown or black hair coloring, so it would be probably be wise for us to avoid it.

I'm sorry this is all I remember. I read this many years ago, and with my memory loss, it's a miracle I remember any of it.

klutzo
 

caledonia

Senior Member
My mom had CFS starting in 1969 after thyroid surgery. Then thyroid cancer in the mid 1980's, then breast cancer in the 90's, then skin cancer in the 00's, then lung cancer (never smoked), then lung cancer #2 which metastisized and that was the end in 2006.

The thyroid cancer wasn't too bad in the scheme of things, but the worst part was that she had apparently turned into a cancer making machine.

But every time I think I am turning into my mother, I have to remind myself that a) I know what I have, which she didn't (until I got sick and diagnosed her based on similar symptoms) and, b) I am getting treatment for it, which she never did.
 

jackie

Senior Member
Messages
591
coincidence?

I too, am a patient of Dr. Chia (over 3 years now). He takes a very thorough history when you see him - I had to wrack my brains trying to remember the smallest of details that he felt might help him treat me! But I didn't think to tell him one apparently important fact concerning my family/medical history.

My father was diagnosed with cancer of the Parotid (Salivary) Gland, which his Oncologist said was not that common. He didn't die of that cancer - but only because he was also diagnosed with Alzheimers at the same time...and this particular cancer can be slow growing.

Because I was his caregiver, and dealing with the Alzheimers was pretty traumatic - I just blocked out the cancer part altogether! He died within a year of his diagnosis, 10 yrs. ago - and 2 yrs. after my diagnosis of me/cfs.

One more strange thing. For over 30 yrs. my father suffered with terrible stomach problems (actually had a good portion of it removed), as well as unrelenting total body pain and what he was told were "flare-ups" of MALARIA!? Nothing was ever officially diagnosed - he was treated with quinine - which never seemed to help the attacks. Makes me wonder.

I'm glad I noticed this thread or I may not have thought to mention this to the Doctor. Thanks for jogging my memory! jackie
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
But...

This question will show what a non-scientist I am, but isn't CFS a Th2 illness, and cancer a Th1?

???
 

cfs since 1998

Senior Member
Messages
600
In light of what Dr. Mikovits is finding in the Incline Village cohort, and that I've heard some of them have been responding favorably to various cancer drugs, it made me wonder if, at least in a sub-group of ME/CFS patients, the disease is a chronic pre-cancer state.

If your immune tests suggest you have a cancer profile then you try anti-cancer drugs designed to fix that problem. I just think they're looking more closely than anyone else.
I don't think it really has anything to do with rituximab working because some patients have a pre-cancer state and rituximab is an "anti-cancer drug". It is a B-cell antibody which means it destroys all of your B cells, thus it is used primarily in B-cell lymphoma, not cancer in general (it is also used in rheumatoid arthritis and other autoimmune diseases). The authors of the rituximab CFS paper discussed two possible explanations for why rituximab alleviated CFS in these patients:

"...a plausible mechanistic explanation is reduced antibody or autoantibody production by B-cell clones."

"...an alternative hypothesis, patients with ongoing infection with a B-lymphotropic virus..."

Since the paper has come out I have been leaning toward the second one. At the time I thought it was working because it was destroying EBV-infected B cells (all three patients had EBV triggered onset, I believe). Now that we know about XMRV and that it infects at a minimum B and T cells...well who knows. A few possibilities are that the three patients in the preliminary study only had EBV and not XMRV and B-cell depletion reduced their EBV viral load, another is that they had both EBV and XMRV and B-cell depletion reduced viral loads of both viruses enough to reduce the strain on the immune system so that it could attack the rest of the infected cells. There are probably other possibilities that I can't conceive of since I'm not a virologist or immunologist.
 

acer2000

Senior Member
Messages
818
I don't think it really has anything to do with rituximab working because some patients have a pre-cancer state and rituximab is an "anti-cancer drug". It is a B-cell antibody which means it destroys all of your B cells, thus it is used primarily in B-cell lymphoma, not cancer in general (it is also used in rheumatoid arthritis and other autoimmune diseases). The authors of the rituximab CFS paper discussed two possible explanations for why rituximab alleviated CFS in these patients:

I agree... and just because blowing up your B cells with chemo reduces the symptoms (presumably due to shutting down immune activity) doesn't mean its a good idea in the long run... or that it solves the real problem. We *need* our B cells, we just need them to "do the right thing".
 

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
I got too sick to keep up with this thread after I started it way back when (and really should not be on my laptop today much given the nasty stomach bug I'm recovering from). While the publication of the Lombardi et. al. paper on XMRV sheds a lot of light on the link between cancer and ME/CFS, I thought I'd also share this study I just saw on Co-Cure:

Immunological Similarities between Cancer and Chronic Fatigue Syndrome: The Common Link to Fatigue?

1. MIRA MEEUS1,2, 2. WILHELM MISTIAEN1, 3. LUC LAMBRECHT3,4 and 4. JO NIJS1,2

Abstract

Cancer and chronic fatigue syndrome (CFS) are both characterised by fatigue and severe disability. Besides fatigue, certain aspects of immune dysfunctions appear to be present in both illnesses. In this regard, a literature review of overlapping immune dysfunctions in CFS and cancer is provided. Special emphasis is given to the relationship between immune dysfunctions and fatigue. Abnormalities in ribonuclease (RNase) L and hyperactivation of nuclear factor kappa beta (NF-κB) are present in CFS and in prostate cancer. Malfunctioning of natural killer (NK) cells has long been recognised as an important factor in the development and reoccurrence of cancer, and has been documented repeatedly in CFS patients. The dysregulation of the RNase L pathway, hyperactive NF-κB leading to disturbed apoptotic mechanisms and oxidative stress or excessive nitric oxide, and low NK activity may play a role in the two diseases and in the physiopathology of the common symptom fatigue. However, in cancer the relation between the immune dysfunctions and fatigue has been poorly studied. Immunological abnormalities to such as a dysregulated RNase L pathway, hyperactive NF-κB, increased oxidative stress and reduced NK cytotoxicity, among others, are present in both diseases. These anomalies may be part of the physiopathology of some of the common complaints, such as fatigue. Further studies to confirm the hypotheses given here are warranted.

***

I'm too sick to give anymore thoughts so I'll just sign off with the Coffee Talk line: "Discuss".

::closing my laptop and laying down::
 

kermit frogsquire

Senior Member
Messages
125
Is ME/CFS a pre-cancer state... or even a very strange type of cancer. Its a very very good question Michelle. I once looked up all my abnormal blood tests and cross referenced them on pubmed. low ACE, high eosinophils, high immune complexes, elevated CH50, low NK cell counts etc. The only condition in which all those are seen is Hodgkins Lymphoma. Of course my idiot immunologists said by grossly elevated CH50 was a sign of "a healthy immune system" but nothing is grossly elevated without reason! So I think you may be spot on, ME/CFS may be a type of pre-cancer lymphoma, and as we known hodgkins disease is also linked to EBV and other B-cell trophic viruses.