1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Ken Lassesen's comments on XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by dannybex, Oct 20, 2009.

  1. dannybex

    dannybex Senior Member

    Messages:
    2,176
    Likes:
    518
    Seattle
    Ken (who used to moderate the yahoo group CFSFMExperimental) came back this morning to post his thoughts on this new discovery.

    I'm not sure if one needs to be a member of the yahoo group to read his post, but thought it would be worthwhile posting the link just the same:

    http://health.groups.yahoo.com/group/CFSFMExperimental/message/128696

    Although Ken sought out treatment very early, he was ill for over a year and a half, and has been well for about 8-9 years now -- full of energy. His wife also was ill -- for over 17 years, with some strong MCS involvement, and is now at what she considers about 95% remission/recovered -- for about the last year and a half. One of their two daughters also has CFS, and is still not well, but doing substantially better...I believe at about 65-70%.

    I'll actually be seeing them on Friday, so can post an update/more details on the weekend.

    d.
  2. Being ill for 1.5 years is like gold dust in CFS, sadly.

    Most of us wait 3, 5+ years just for a diagnosis.

    I'm not suprised he improved, good for him - but it's like a miracle
    amongst a medical holocaust.

    We could all have gotten healthier, especially if private health care is available and anti-viral medications/supportive medications can be obtained.

    In the UK, they're prohibited and health insurance for chronic illness is prohibited.

    Psychiatric or bust. (An oxymoron if there ever was one).
  3. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    dannybex, thanks for posting that. I subscribe to that group, but overlooked this post.

    Interesting that he mentioned Vitamin D. I was tested as having very low Vitamin D. I also have CFS. I also have prostate cancer, although mine is not thought to be aggressive. I hope to get an RNase L test to see what that says.
  4. dannybex

    dannybex Senior Member

    Messages:
    2,176
    Likes:
    518
    Seattle
    I completely understand. I've been sick for 11+ years, so I can totally relate. Unless one has $$ or adequate insurance, it's often very difficult to get the cutting-edge tests that can help guide treatment. One of Ken's main suggestions is the HTRP Panel from Hemex Labs, but it's often not covered by insurance, certainly not medicaid here in the US.

    But keep in mind that his wife was sick for 17 years, and has been well now for over a year and a half.

    As much as we wish, we can't get that lost time back, but hopefully stories of long-term cases who did recover can be inspiring...

    d.
  5. Robin

    Robin Guest

    Hi! I don't know who Ken Lassesen is or what he said in his post (I don't have a yahoo account.)

    But I want to address something you said -- that we could all be healthier with private health care and access to anti-virals. Now, this is my opinion, it's anecdotal and obviously limited, and I'm sure someone will want to throw a tomato at me, but, I am very skeptical that any positive response to treatment is much more than coincidental.

    Let me explain. I've had CFS for almost 15 years. I was diagnosed in 1995 -- this was way before anti-virals, even OI, low cortisol, SPECT scans, Dr. Myhill, probably even before Dr. Cheney's elimination (starvation) diet. Pretty much, you could do 1) supplements and natural things (mostly the same things that people are taking now: magnesium, CoQ10, DHEA, l-carnitine, vitamin D, homeopathy, juicing, etc.) 2) Injections if you were lucky and a Dr. would hook you up: gamma globulin and kutapressin, and 3) ampligen if you were super lucky and got to be in a study. There were no message boards, if I wanted to meet a CFS person online I had to use something called a LISTSERV (I'm still not sure what that was.) And, indeed, online and in my support group, people were trying all of these treatments and some were improving and others were not. I was limited to group one but a woman in my support group got her hands on kutapressin. I WAS SO JEALOUS, I wanted kutapressin so bad. She improved...a lot. I would lie awake at night, a cold ache in my gut, wondering if kutapressin was the key to getting my life back - going back to school, getting my friends back. I begged my dr. but there was no way in hell he was injecting me with bovine liver extract. Not only did kutapressin lady improve, she recovered. EVERYONE went on kutapressin (except me), well, three people did. Last I heard, they're all still sick.

    I stepped out of the CFS community both at home and online, because the sad stories were keeping me from dealing with my own grief issues (and because my increasing skepticism of the latest CFS treatment was unpopular!) I've half heartedly tried various things over the years to no avail (growth hormone! dr. bell's saline bags!), and, witnessed others doing the same. Through my past associations and through family and friends ("you have CFS? I know someone with CFS! Playdate!") I've come across about a half a dozen CFS recoveries. You know what? With the exception of the basics -- good sleep, rest, avoidance of stress -- not one of them had followed the same treatment. In fact, only one person claimed a treatment had helped: a woman who got herself a lyme diagnosis and three years of antibiotics. She still has symptoms but she's well enough to work. Did the antiobiotics help? She thinks so. I can't say, except it's possible she got better on her own.

    It's frustrating to know so little about the outcome of CFS, statistically, after all these years. But, in my (again anecdotal) experience, people with CFS tend to get better. Very few recover, and some worsen or remain static, but most can look back and think of a time when they were much worse.

    I DO have private health care, and have thought about anti-virals for a while now. It seems to be the same old story: some people claim improvements, others don't. Some have adverse side effects and stop. You have to find a dr. somewhere to give them, and odds are he doesn't take insurance. I understand that Dr. Peterson does anti-virals (?) and yet he still has a trove of CFS patients to offer up for studies. Do I believe that they help recovery? Probably in some cases yes! But, it's soo hard to differentiate cause from coincidence in a disease like CFS which often tends toward improvement.

    So, while you main have CFS-unfriendly socialized medicine over in the UK, and you may have Simon Wessely (honestly, if I met that man in public, there's no way I could stop myself from spitting on him), but, if you can rest, relax, and get good sleep, I really think that you're not much worse off then people that can get the cutting edge stuff. I've known people that have spent tens of thousands on treatments to no avail. And, one of the people I know that recovered? He did it on a bad diet, with caffeine, alcohol, and (shhh) refined sugar. And, you didn't hear this from me, a little help from his friend Mary J. Now, I am surely getting tomatoes thrown at me.

    Don't give up. No matter where you are, there is always hope.
  6. Zona

    Zona

    Messages:
    30
    Likes:
    0
    Canada
    Robin

    LISTSERV is an old email program used on a server (probaby a unix server) and was used by CFS-L, CFIDS assoc email group (still is). I met my husband on that list and IRC group in 1995. Might have seen you there too? :) Both my husband and I have CFS,FM and MCS. Me since 1979 and him since 1989.

    I have an old friend in Az who used to have a support group in the 80's-90's and then coordinated support groups etc. She somehow also had a link to Dr Peterson. I asked her once upon a time if she ever knew of anyone who got over CFS after the so-called "six year window". They used to say that some got better before they'd been ill for six years but after that time frame the odds were slim to nil. She told me that she indeed did. She knew two and both had been in her personal group.

    She said they were both had severe cases. I asked her what they had done to get well and she said "nothing in particular". They both slowly improved, when they had set backs they were short term and not severe until one day they were well. I asked her how long they had been well and at that time both had been symptom free for over 4 yrs! It was several years ago that I asked her that question btw.

    When I lived in the states I had no insurance. Most of the treatments I tried were all alternative health type things. I used to wonder if it would have made much difference if I had a regular dr. (I did see several a lot for the first couple of years and then again later in 1989 when one finally had a name for my illness "CEBV".) But I noticed that all those I knew who did have insurace and/or went to MD's regularly - or even other types for that matter - didn't seem to get very far except for spending money. Something might seem to work and help for six months only to hit a plateau and then down hill they'd slide again. So disappointing. I had children to raise and couldn't afford making myself some dr's ginuea pig.

    Now I live in Canada and have health care but I rarely ever use it. First off local Dr's here poo poo CFS and they seem to think all you need for FM is exercise. Forget MCS thought there was an article in the news paper several years back about a collection of local folk who have it. I no longer even wonder if MD's are of much help. I only see them for other things like sprained ankles. I would love to get some chiropractic treatments and natural suppliments etc if I could afford them. That seems to help more than anything... oops... not quite true.... REST, less stress!, REST, avoiding food allergens etc basic things are most important.

    I'm more apt to think that each needs to observe their own bodies, read, share and work out their own treatment regime as i think we are each a bit unique after you get past the basics.
  7. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    7
    Robin and Zona, I have to agree with you. And Robin, there's no tomato throwing here for expressing your thoughts! I've never known of anyone in my personal life who had a severe case of ME/CFS. I and the few I've known are the walking, working wounded. We just struggle along. I haven't been involved in any local support groups and have only met or heard of a few people here and there who have ME/CFS, so I don't have much to go on.

    I believe there are people who hit upon the right treatment for themselves and do recover completely, but like you I feel that this is really unusual. I think for most of us the best we can do is to try to manage our illness and try to keep the crashes away, which is sometimes impossible.

    This isn't to say it's all doom and gloom, as there are things that can help us to at least function a little bit better. I do think it's kind of hit and miss. Not all of them take money, but buying supplements or going for any type of treatments certainly does.

    Our only hope is to hang in there and pray that the puzzle is on its way to being solved and that the new research will eventually lead to real treatments, if not cures. The hard part is waiting while the years slip away.

    Oh my, I don't mean to be a downer! We just have to do the best we can with what we have at the moment. If we have to rest to live, then we have to rest. My illness started out with a bang and had waxed and waned until I hit the 15-year mark, then it was crash, and while I've made my life much smaller to accommodate, I don't know whether I'll recover back to the slightly better level I had before that crash more than 3 years ago. I've actually tossed a theory around in my head that the 15-year mark is a bad one and that people seem to deteriorate after reaching that point. That only comes from myself and stories of others I've read.

    This is definitely a difficult path, and I agree that we each need to find our own way. May better options lie ahead!
  8. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Ken's post

    Someone emailed me the post. He seems to be focussing on Vitamin D. As for the German results and a regional infection--we don't know what assays/techniques the Germans used.
    As for Vitamin D, evidence certainly does show it's important in immunity generally. I personally am not convinced that supplements are the best; I think sun is better and may have broader effects than we realize.
    I'm also not sure he's interpreting the XMRV "helper" of MLV correctly. XMRV is a variant of MLV (murine leukemia virus) that can infect humans. The study he's referring to is one dannybex posted, and I read it as saying, though we've taken the replication sequences out of MLV when using it as a vector in gene therapy, if it's in the presence of XMRV it can replicate because XMRV serves as a helper virus to help it do so. This doesn't mean that in the human, for instance, XMRV would help nonreplicating viruses replicate, or would stimulate latent viruses to replicate. It's possible but who knows. And besides, generally, I think when one virus switches on it probably stimulates others to replicate too.
    ---

    Hi Ken, here -- finally making a little time to put together my thoughts and do some basic research on pub med

    Item 1: What we know about XMRV
    (16 articles)

    1. "a prevalence of 40% in prostate tumor samples from American patients carrying a homozygous R462Q mutation in the RNaseL gene." and "Our results indicate a much lower prevalence (or even complete absence) of XMRV in prostate tumor patients in Germany"
    http://www.ncbi.nlm.nih.gov/pubmed/1983557 --> XMRV may be a regional infection!!!???!!

    2. "We found XMRV infection to be independent of a common polymorphism in the RNASEL gene, unlike results previously reported.
    This finding increases the population at risk for XMRV infection from only those homozygous for the RNASEL variant to all individuals. Our observations provide evidence for an association of XMRV with malignant cells and with more aggressive tumors."
    http://www.ncbi.nlm.nih.gov/pubmed/19805305

    3. "RNase L gene has been identified as HPC1 (Hereditary Prostate Cancer 1) gene. That finding has led to the discovery of a novel human retrovirus, XMRV." http://www.ncbi.nlm.nih.gov/pubmed/18950583

    4. "XMRV was rarely detected in non-familial prostate cancer samples from Northern European patients."
    http://www.ncbi.nlm.nih.gov/pubmed/18823818 --> Suggests that the ability to get it may be genetic....

    5. "We tested the ability of XMRV to complement replication-deficient MLV vectors upon co-infection of cultured human cells. We observed that XMRV can facilitate the spread of these vectors from infected to uninfected cells." http://www.ncbi.nlm.nih.gov/pubmed/18769545 --> Suggests that it may NOT be the causal virus, but a helper virus...

    6. " These data provide to our knowledge the first demonstration that xenotropic MuLV-related viruses can produce an authentic human infection, and strongly implicate RNase L activity in the prevention or clearance of infection in vivo. These findings also raise questions about the possible relationship between exogenous infection and cancer development in genetically susceptible individuals."


    --> It looks like the RNase-L research was in the right direction...
    The association of XMRV with prostrate cancer rang a bell with me, because low vitamin D levels was a predictor for prostrate cancer.

    * " A vitamin D deficiency has also been documented in patients with prostate cancer, ovarian cancer, as well as multiple myeloma"
    http://www.ncbi.nlm.nih.gov/pubmed/19817700

    * " Most identified ecological, case-control and prospective studies on the incidence and mortality of colorectal, prostate, breast carcinoma and non-Hodgkin lymphoma reported a significantly inverse association with sun exposure." http://www.ncbi.nlm.nih.gov/pubmed/19730382

    * "These results suggest that VDR polymorphisms may be potential biomarkers for prostate cancer susceptibility."
    http://www.ncbi.nlm.nih.gov/pubmed/19684888


    --> genetic variations is a factor.

    Well, those of you that are females are probably asking... prostrate cancer? The significant aspect is that the virus is associated with two
    things: CFIDS and prostrate cancer. With prostrate cancer, we know that a low Vitamin D level increases risk of getting it, decreases survivability if you got it etc.

    It is reasonable to assume that the
    damage the XMRV does with CFIDS is also influenced greatly by Vitamin D levels (which was seen by Dr. Hock in Germany). So the first step would be to try hard to increase the Vitamin D levels to the optimal levels (not just into the "normal range" seen in the local vitamin-D deficient population. 2nd step would be antivirals...

    For most of you, that would likely mean 10,000 IU/day (Consult with your MD on your current level) which should be **gradually** worked up to.
    Some CFIDS react (herx for a few hours) at 50 IU..
  9. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Robin, Zona, Finch, everyone...

    I agree.

    I was very ill for the first few years and slowly improved to about 85% of where I had been prior to getting ill.

    I had constant cystitis during my "recovery" which kept me on antibiotics most of the time during those years. I soon realized that some antibiotics worked and some did not even when my doctor assured me that the ones I was rejecting were far more effective against cystitis. I insisted on tetracyclines whenever I could even though sulfa drugs were far more popular - sulfa drugs made me feel worse.

    I would always feel ill long before anything could be cultured from my urine. I never had burning. Antibiotics always worked.

    This pattern of illness followed by antibiotics continued through my remission but I needed antibiotics less often.

    Twenty years into the illness, and after more than 10 years of rich life - with episodes of illness in it, I seemed to wear out. I have spent the last 10 years attempting to get back what I lost through rest, meditation and antibiotics and I think it's slowly working. I can't yet maintian health and much activity - activity being standing up, washing my hair, having a conversation - but I feel I'm headed in that direction. I don't know that I can hit 85% again but I'm older now. I could support myself and have a pretty decent life if I could get to 75% and I think I will.

    I'm afraid of harsh treatments. While I'm very excited by the XMRV research, I will not be first in line for anti-retrovirals. I will be in line at some point but with trepidation.

    I have often thought about posting about my experience with what I think of as benign neglect - tetracyclines, rest, meditation... oh and antihistamines. I don't even take supplements because I can't afford them. I plan on being tested for celiac and gluten sensitivity because I suspect I have an issue there. I've wanted to do this for a few years but have not been well enough to stay upright long enough to get to the doctor and then to a lab. I'm getting closer.

    I will start to pulse antibiotics again soon because I've been losing a little ground lately. But, just a little.

    I work my energy sweet spot constantly. I pace. When I regain >75%, I want to teach meditation to the scatterbrained and, perhaps, coach people with ME and other chronic fatiguing illnesses. I'd like to help them find a peaceful, meaningful, hopeful way to live within their abilities.

    I'm hoping the XMRV research will change everything and there will be a magic bullet but I'm not counting on it. I plan on improving the quality of my life one way or another.

    I got a little lost here! I hope this is relevant to the conversation! :eek:

    Peace out,
    Koan

    ETA I was not meditating when I regained 85% initially. I was a mindless, anxious overwrought young woman - in a big way. I believe I was simply in that golden window and on antibiotics.

    However, I think meditation is a big peace of maintaining any gains now. (What an interesting mistake - peace!)
  10. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Koan, tetracycline is treatment not benign neglect....obviously it helps you and that's great. The cyclines are anti inflammatory--maybe it's downregulating NF Kappa B while keeping opportunistic infections in check.

    I'm afraid of strong drugs too--afraid of toxic drug injury with my seemingly delicate system.
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    Hi Koan--

    I also was at about 80% back in 1987, and threw it away by reverting back to my old anxious drivenness. Learning how TO BE, and how to consciously disengage from the antics of "stupid mind" :p:p:p (that's my meditation, as I do not officially "SIT") has been a big part of my treatment protocol.

    Now I swear, I am really going back to bed.
  12. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Yes, Jen, I know tetracyclines are treatment. I also know that they were effective not simply because they were treating infection. My symptoms preceded bacterial infection every time.

    My desire to post about "benign neglect" had more to do with my attraction to the phrase than to its accuracy in describing my situation which is why I haven't before now.

    One can become thus enamoured of a phrase.

    Peace out,
    Koan
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I hear you.

    I don't "SIT" either. Orthodoxy, of any stripe, doesn't interest me.

    You know, I think many people, having read only certain of my posts, believe that I do not think the mind/body connection is important. Nothing could be further from the truth. It has been my experience that neither one nor the other can be dismissed from this picture.

    Now, Miss Birdie, back to bed with you!
    :cool:
    Koan
    ;)
  14. dannybex

    dannybex Senior Member

    Messages:
    2,176
    Likes:
    518
    Seattle
    Me three. I worry too about antibiotic resistance...but know too that abx's have helped a lot of people -- including Koan -- and Ken. :)
  15. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Me too! (Me four?)

    Contributing to antibiotic resistant strains of bacteria is a huge issue for me. I once, many years ago, had an infection which was susceptible to just one existing antibiotic. I do not want to loose upon the world a modified bacteria!

    I struggle with the ethical implications of this decision and will not take any abx newer than Doxycycline. My next course will be with old fashioned tetracycline because of that very issue.

    Tetracycline has been used for many decades to treat chronic conditions like acne and probably has little efficacy as an antibacterial agent.

    If it works on my symptoms, as an immune modulator perhaps, I will stick with it.

    peace out,
    koan
  16. dannybex

    dannybex Senior Member

    Messages:
    2,176
    Likes:
    518
    Seattle
    "Anxious drivenness."

    THIS IS SOOOOOO IMPORTANT, it deserves a thread of it's own.

    I can look back over the past 11+ years and count hundreds of times when I knew I was overdoing it, or pushing myself too hard. Shoot, just yesterday I could name a few instances. I know it leads to crashes and setbacks, yet I keep doing it.

    Why?

    I really think this would make a good, separate thread topic. I know that in many cases, just walking a few steps may be considered 'overdoing it', but when we do have a choice between rest and 'oh, I'll just do a little bit more, or stay up just a little bit later, etc.' -- why do we do it when we know it's harmful???

    Deeeeeeep breath.

    Dannybex

    p.s. Ken Lassesen has worked as an independant contractor/consultant for the last 4-5 (?) years, and as I mentioned earlier, he's full of energy.

    But he's told me that he will turn down a job, if he senses there will be too much negative stress involved...as it could lead to a setback.
  17. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Danny--start a thread in mind/body?
    My anxious drivenness can be all internal. When I DO things I'm less anxious. My anxious drivenness tends to take the form of: "WHY did I run across that practitioner who did x, y z and permanently harmed me? WHY do I have to deal with this resulting SYMPTOM and PROBLEM forever? WHY did these bad things happen to me? Why is my life the way it is? How can I change it NOW? I can't STAND this." ETCETERA. Its the internal dialogue.
  18. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Meditation. Any kind. It's all pretty much the same.

    When you can't go out, go in. There's a whole world in there. It's very cool.

    I was THE LAST person in the world that anyone thought would ever meditate.

    Who knew.

    Meditate.
  19. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    Was moved by reading this thread and I really appreciate more and more the people who post to this forum. Thanks.

    Yes, it is ironic....many of us wish we just had back the money we have spent on treatments so we could afford to hire someone to do the mountains of laundry or clean the grungy house! Or hire someoene to take us to a sunny beach now and then....

    Well, such is life.

    It is funny: every time I think I have come to a level of acceptance of this illness and am finding happiness each day, I hit a new wall. Today it is realizing I will not be able to go with my family on an important road-trip. I am all weepy again, though nothing about my illness has changed. I guess grief is an ongoing process, comes up time and time again because that is its nature.

    Hey, on a brighter note, my doc once remarked (she has been in ME/CFS field )for 30 years) that every now and then she hears from a patient who has recovered -- and cannot attribute the recovery to anything at all in particular!..ya never know...

    Marylib
  20. Robin

    Robin Guest

    Hey, a fellow listserv alumna! I was on CFS-20s and occasionally their IRC channel in 1997-8ish, and I belonged to another list which I don't remember. My friend met her boyfriend that way too, I had no idea all of those hot romances were happening on the listserv!

    Regarding the six year window, 2/6 recoveries I know of were past six years. One guy was severe at onset: wheelchair, sponge baths, etc. He was unhelped by Ampligen, it made him worse. After 18 years he recovered to 75% and returned to work. My friend was housebound for 8 years and had particularly neurological symptoms. She started feeling better suddenly and over the course of a year recovered fully, and now works full time as a chemist.

    It seems like in the past, things such as illness severity at onset, and duration of illness were discussed a lot more in the literature in regards to speculation about outcome. Unless there is some huge prognosis study somewhere I don't know about, it does seem that recovery is slim past 6 years but not impossible.

    Yes! I think of our immune systems like a sudoku puzzle. All of the missing numbers are the parts that don't work right. Now, maybe some takes ampligen, or an anti-viral, or just heals, and a number gets filled in and so the rest of the numbers fill in. But everyone's puzzle is a little different so it doesn't always work. (Discerning what helps vs. what is normal healing is the tricky part.)

    I really don't know what mind/body means, but if you mean relaxing and avoiding stress helps CFS I totally agree. Like with diabetes (where stress raises blood sugar), and MS (where stress exacerbates symptoms), and hypertension (where stress raises blood pressure), I believe that stress provokes some mechanism, just like the post-exertional exhaustion from overdoing, that can worsen CFS.

    The years where I have had the most improvement have involved the least external stress and relapses caused by over-doing.

    I think trying the tetracycline is a great idea and I hope it works out for you!

    @Finch: I think you will get back to where you were before your crash. Don't give up! My friend and I joke that CFS years are like days to other people. Three years isn't that long. For the first time we have research that has potential to affect our lives. I think this illness is reversible and I have every hope that we all will feel well someday.

See more popular forum discussions.

Share This Page