A certain apathy has set in. The hangover after the party. After years of reading scientific papers every day, it’s hard for me to do it now, because what difference will it make anyway? In the past, the comments on this blog reflected growth and movement within the community. Now it is mostly polite, not as contentious, but with a new lassitude; the tracker still seeing lots of the same people, but after all, what’s left to say that requires 300 comments? The news is all bad. Waiting for Lipkin; like waiting for Godot…
The apathy is especially severe for the professionals involved. The scientists who have the wherewithal to actually crack the case are pretty much gone. The doctors who were interested in collaborating for the WPI aren’t. Everybody pretty much went back to what they were doing, almost relieved not to be bothered anymore. XMRV is dead. Phew, don’t have to think about that anymore. Too bad it made so much sense, but the science doesn’t support doing anything about it clinically. Exempli gratia: Role of psychological aspects in both chronic pain and in daily functioning in chronic fatigue syndrome: a prospective longitudinal study. With friends like this, who needs enemies?
In the meantime, I am the doctor of last resort for a small group of ME/CFS patients with longstanding intractable illnesses, who have already been everywhere and done everything. Even so, they are improving with very gentle measures. Pulsed high dose oxygen, Deplin, Vitamin D, basic supplements, a few herbs. Treat the hormone dysfunction to the extent possible. Stop or wean unnecessary medications (most). Treat associated conditions like PCOS, which is extremely common in younger women with the disease. A few dietary recommendations. Primary care management from a provider knowledgable of their disease. Nothing heroic or dangerous. Primum non nocere.
In addition to the basics, I have one moderately ill, very difficult to move patient doing extremely well on Viread and I have one patient trying Ritchie Shoemaker’s VIP (vasoactive intestinal peptide) protocol, under my direction, still early days. I have one intractable pain patient with biopsy proven neuropathy that has improved with oxygen and Trental, an old safe drug that has been used with some success in the ASD world.
In my last practice, I treated Lyme patients with HBOT at very high pressures for long treatments. They often “herxed”. At the time, LLMD’s were my advisors and the “wisdom” was that this was a good sign of eventual response. I was using doses of oxygen designed to kill bugs and I did have a few patients go into remission following this treatment (without antibiotics). I now think the herx is a cytokine storm and a bad thing if it goes on for more than a short time. I also treated some patients who were undiagnosed “mystery illness” patients, despite extensive workups by good doctors, such as trips to the Mayo Clinic. It is now clear to me that those patients had ME. Knowing what I know now, even with access to a chamber that could go deeper, I wouldn’t go beyond 1.5 ATA. I am now using a soft chamber that goes to 1.3 ATA (4 psi). I’m again combining hyperbaric oxygen with neurofeedback and finding them synergistic, as I did before. I have been meaning to write about neurofeedback for a long time, and will do so soon, or better still, I will try to prevail upon my mentor, Siegfried Othmer, to write a guest blog. Information about neurofeedback, Sue and Siegfried Othmer and their contributions to the clinical world of neurofeedback can be found at EEG Info and The Brian Othmer Foundation.
I have now heard from quite a few people, in addition to my own patients, that have tried normobaric oxygen by concentrator or tank with various delivery systems, but all using >5L/min for a half hour at least a few times a week. Responses vary from nothing to “wow”, maybe 50% clear responders. It seems to help more noticeably with sicker patients and be especially useful for intractable pain, the toughest of the tough to treat.
I have also heard from two people in the UK that are availing themselves of one of the charity chambers and finding it helpful. My understanding is that they will treat anyone with a neurological disease, so neuroimmune illness qualifies. I do not believe that it is necessary to be referred by a doctor, but I am not positive about that. Maybe someone in the UK who has tried it will respond to this question. I have a patient now here for a month, that has responded beautifully to normobaric oxygen at home, 10L/min by non-rebreather mask, and is now being treated in the soft chamber with excellent early results. It will be interesting to see if with more experience she finds it more helpful than the concentrator alone. It has been suggested that pressure is an independent variable to increasing partial pressure of oxygen alone for unknown reasons, possibly related to encouraging mitochondrial biogenesis.
I have heard only one patient report of normobaric oxygen causing worsening. She is not my patient and this happened quite a while in the past when she was also undergoing Lyme treatment, so I wonder if it wasn’t a “herx”. Otherwise I have heard of no complications that didn’t involve the use of pressure, which ups the ante a bit.
Deplin is a big hit for some, impacting mood, energy, stability. It causes dose related insomnia in people who are sensitive to it and has no effect on people who are not. I have one patient who had an idiosyncratic brief depressive reaction to it, but typically it is overactivating if the dose is too high. I have a couple of patients who think it helps in important ways, but who can tolerate only a very tiny dose, requiring powdering a tablet and dividing into multiple doses. Although there are some OTC supplements labeled L-methylfolate, as far as I can tell they are really 5-MTHF and not the same as prescription Deplin. Deplin comes as a generic DuLeek-Dp, which is not much cheaper and one of my patients thought not as effective. I am advising my patients to try folinic acid and 5-MTHF as well, always one at a time, with B12 and B-100 (unless pyridoxine is a problem, as it is for two of my patients).
As I have said many times before, the prohibition against antiretroviral drugs is insane. While the run on rituximab starts, and will soon kill a few people, tenofovir is not available for anybody but AIDS patients, though it now comes as a liquid for children under two years of age with HIV. It is in clinical trials as prophylaxis for healthy people at high risk; for that purpose, it is turning out not to be effective alone, so is being tested in combination. There has been a rationale for trying reverse transcriptase inhibitors for a wide range of problems for a very long time. Sporadic reports suggest efficacy for autoimmune diseases, but are never followed up. It isn’t in any way outlandish to think that replication incompetent ERV’s are involved in human disease and RTI’s might be helpful.
Even though the responses to arv’s have not been dramatic or complete enough for certainty, there are some of us who have chosen to stay on for a longer term, because we believe it is likely why or part of why we are better. The sum total of the negative experience has been a few self-limited early adverse reactions, some inflammatory flares at the beginning of therapy that resolved with stopping the drugs, one prolonged flare even after discontinuation of therapy and one case of pancreatits that was thought to be related to the drugs, though pancreatitis is not a known complication of the drugs in question. Personally besides the impact on my wallet, the only thing I’ve lost from trying arv’s is my once straight hair is now curly.
Meanwhile, after so much spilled milk, we’ve certainly learned a lot about how science happens, or doesn’t, and how little the needs of patients matter in the equation of what gets studied or learned and how that knowledge is applied.
At this late date, the person that has managed to do the most credible work is a 70 year old, sick oncologist in Buffalo. Dr. Snyderman has produced the most remarkable data. Earth shaking data, or it should be. Completely convincing, yet he has not been able to make the scientific world take notice and do the work. He has written to many, many scientists. Some do not even bother to answer.
Today’s song: All My Days by Alexi Murdoch
For me personally it’s less apathy and more that I don’t know just WHERE to put my time and limited energy. I’d be happy to raise money fr research if I just knew where is an appropriate spot at this point.
Just why is no one looking at patients who tested anti-body + to XMRV? I can accept the idea that it’s a protein cross reaction but a cross reaction to WHAT????
There is nothing in years of research that the antibody test used in Lombardi cross reacts to. It will identify xenotropic and polytropic MLVs, but not ERVs (old retroviruses) found in humans and mice. They know that. Not one other study has attempted to use this assay, preferring to not be sure. Pathetic. ERVs are reactivated in all neuroimmune diseases, Exogenous retroviruses will reactivate endogenous ones.
Treatments that inhibit reverse transcriptase won’t be much good against MLVs that propagate through clonal expansion rather that reverse transcriptase. MLVs can also cause disease when latent.
This quote is a little old, but makes it easy to understand.
“The relatively lower diversity of BLV and that of human T-cell leukaemia virus (HTLV), the type members of the BLV/HTLV genus of the family Retroviridae, may reflect the fact that replication of these viruses is primarily by clonal expansion rather than by reverse transcription (Wain-Hobson, 1996).” http://vir.sgmjournals.org/content/79/6/1337.full.pdf
Why put any hope in the Lipkin study? The NIH has already arranged for the criteria to be different to Lombardi et al. What else are they going to change that makes this not a replication study?
I wasn’t at all suggesting that it IS a cross reaction :)
Just that if that’s the line that’s being put forward, well, they should prove it.
Show me the data to support the theory and I’ll accept it. So far, no one has done that.
Didn’t think you were, but believe it is important for everyone to know that there isn’t a cross reaction. :-)
I would like to see them prove it with a replication study, not getting the original scientists to do what they have repeatedly done, but without the full control ala the Lipkin study.
Why put any hope in the Lipkin Study?
Perhaps some of us are hoping for a good scientific result from the “Lipkin Study” because Dr. Ian Lipkin is a first-rate scientist who has never indicated that he has any bias and Dr. Judy Mikovits and Dr. Frank Ruscetti and Dr. Jose Montoya are all participating in it.
Ian Lipkin has produced 0 research into MLV-related retroviruses. The study is under the instruction of the NIH, Fauci and Collins. Lipkin is not testing and it doubtful if he has designed the study. Only his name is so far attached to the project.
The NIH have perhaps let some information on the plan for this study out to the media. The clinicians are to choose their selection criteria and the labs are to use their own methods. It is already looking like a weak study, without a hope of finding the truth. None of those who are named so far as selecting patients do so using the Canadian criteria. That is not a replication of Lombardi et al. The CDC does not have an assay that works, and the FDA under Lo has now resorted to using the test that found 0 patients positive in Lo et al. Not the assay that found patients positive. That leaves Mikovits and Ruscetti using their assays, that do work and are clinically validated, but on patients who cannot be claimed to be from the same cohort as Lombardi et al. They have no control over errors in collection and processing, which are a crucial element of their assays. And the person who is coding the samples is not named.
If this was designed to produce as accurate a picture as possible when compared to Lombardi there would be no change in criteria and all labs would be using the Lombardi methods as well as their own, without the infected plasmids, mouse or human cells lines in their labs. Results could then be compared and errors would be uncovered. They haven’t even said how a positive is to be decided. What are going to do? Say only a sample found positive by all assays is positive? When only Mikovits and Ruscetti have assays? What about the issue of blood versus tissue? Many MLVs are never found in blood and when they are it is in such low quantities that most assays cannot detect them.
The NIH should be funding several studies to replicate Lombardi before cornering scientists to reproduce their results in a study that is not guaranteed to be a replication study.
Besides Coffin’s last paper was positive for sequences identical to the Lithuanian isolate in 4 CFS patients who were also in Lombardi, but using different tests, and his last HIV and prostate cancer papers were also positive. There are a numerous others that have found the viruses and published under dubious headings. They don’t even have a source to pin contamination on.
The propaganda is the problem. The question is how do we plan to tackle them for the pathetic studies they have used to try and bury a valid finding. It doesn’t matter what the results from the NIH study are. They have and are still spinning everything without testing the patients for the real retroviruses. The Government fears the patients fighting back. We should do that and stop them once and for all from destroying the lives of people with ME.
Thanks for Telling us all this.
I hope dr lipkin will do deep sequencing on the samples.
I also hope the 500 isolatescan be looked at .
Deep sequencing is no different to PCR. Just as many variables that can stop an assay being sensitive enough or reasonably sensitive. With no promise that the samples will be chosen according to the Canadian criteria, and the international definition isn’t the Canadian either, then it cannot be expected the samples would contain the MLV-related retrovirus.
“They’re’ giving HIV drugs to 2 year olds?? Yet I’ve been sick and without treatment for 15+ years now. Give me a break!
Like Siobhan, I’m not at all apathetic, and I too don’t know where to put my energy, but also I don’t have much energy to put. Along with some other, unrelated blows life dealt, the troubles in the research world have taken a lot out of me.
I have been trying to put some energy into raising awareness. 12 May is coming up soon: two months from today. Actions for awareness are being planned all over the world and our fellow patient Joni Comstock has set up a website to share publicity. More locations, more varieties of actions, and more neuro-immune diseases all working together for visibility – if you have an action planned, whether it’s a giant rally or a single blog post or a video you make from your sickbed, you can get it added to the website: http://www.may12.org/
I don’t think I’m seeing apathy from fellow sufferers but I do think I’m seeing exhaustion, like what I’m feeling, and lack of a clear action focus, like Siobhan expressed. But if nothing else, we can shout out like the Whos on Horton’s puffball, We Are Here!
Thanks, Dr. Deckoff-Jones, for sticking with us, working to put your energy wherever it’s most needed, as we are.
This is posted for Gerwyn as he cannot at this time.
There are gammaretroviral HERVs but only one MuLV class, namely HERV E. This is not upregulated in people with neuroimmune disease so would not explain the absence of a serological response in controls. HERV-W is another gammaretroviral HERV with a full env ORF and is upregulated in people with a neuroimmune disease compared to those without, but it is of GALV origin, not MuLV. The antibody response is specific for the presence of SFFV env, which is a test for a MuLV class gammaretrovirus. A HERV would not explain the observations when taken as a whole. There is also no HERV that produces p30 proteins for example or P15 which was demonstrated in Lombardi.
What disease do retroviruses cause in mice?
Does anyone have a link to a paper?
Thanks a lot.
Crafter Kate.
They cause a range of symptoms ranging from cancer encephalitis and a fatal spongiform encephalopathy
The gammaretroviruses caused cancers and neuroimmune diseases in mice. I have the HGRV and in my immediate family we have one case of leukemia and my mother survived breast cancer. We also have Parkinson’s, MS, Gravesdisease, and my sister and I both have fibromyalgia, I also ME. That leaves one brother who is still well although he has been experiencing chronic migraines and other unexplained health issues for the last year. Docs are unsure why.
So that is 7 out of 8 members in my immediate family with either cancer or a neurimmune/autoimmune illness. One pending case unsure. Those are some pretty good odds with them developing an illness with my being positive. Oh and there is no prior family history of any of these diseases in my family. Seems the belly of the beast is alive and thriving in my family. I had hoped the next generation would not have to suffer the same fate. I do not want to watch my son or grandchildren end up suffering with any of these illnesses. It has been much to bare watching the devastation and suffering of my family. How many more families have to suffer? And there are many already it appears.
Notice that the above post has said I’m in Fareham, Hampshire, lol!
Where’s that? Why is it picking me up in that location, must be some settings. :-)
Love the song choice too Jamie. The acoustic guitar is one of my favorites! I’m reteaching myself to play mine after 33 years.
hi jamie, I am just investigating a local MS hyperbaric oxygen venue that lets people with other diseases enter. I am quite worried about trying it but have spoken to other users in uk who seem to get help with it…. that said…I actually dont understand what you are saying about oxygen as I am a non scientist, are you saying hard chambers are ok? as this is what the ms one is.?
@ em,
Soft chambers can only go to 1.3 ATA (the equivalent of about 10 feet of sea water) and a non rebreather mask will only deliver 80 or 90% O2. The MS chambers in the UK treat at 1.5 ATA (16 feet of sea water) and use hoods with neck dams to deliver 100%. Optimal dose has never been studied, but the hard chamber delivers a higher dose. There is a search feature in the header that will take you to the information you need. I have written 3 previous blogs about oxygen that are fully referenced.
Jamie do you have an opinion on the use of protease inhibitors that have been demonstrated to inhibit xmlv protease? If there is an autoimmune component in the disease stemming from molecular mimicry of human proteins by retroviral proteins, would a protease inhibitor help? Reducing protein cleavage might leave antibody binding sites unexposed and decrease autoimmune activation. The reason I ask is because I have Sjogrens and my wife has Fibromyalgia/CFS. I’ve been reading up on how retroviral proteins are found in the saliva or Sjogrens patients and how they often have auto antibodies to muscarinic receptor M3. This inhibits receptors relates to salivation, gut peristalsis, tear production, and other functions. Sjogrens responds to treatment with AZT. My wife tested positive for XMRV using the vipdx test, which lead me to think all these factors may be linked. I understand these are really not questions that can be answered with further research, but I would at least like to know your opinion on the safety of different protease inhibitors like lexiva.
I have tried Lexiva twice and didn’t tolerate it. My rationale for doing so is covered in earlier blogs. There is a search feature in the blog header that will find the information for you, including references.
A few disjointed thoughts on the non-apathetic and hopeful side of things:
First, I read the abstract to which Jamie linked http://www.ncbi.nlm.nih.gov/m/pubmed/22349876/ and it made me wonder, once again, why “our” research $$ continues to be wasted on these psych studies. Of course people who experience very bad pain are going to be more depressed and engage in more “catastrophizing” than people in less pain. I mean, seriously – who doesn’t “catastrophize” when having major pain (“WTF is WRONG WITH ME THAT I HURT THIS MUCH?”), and who wouldn’t worry MORE the longer it goes on? That’s not the way this abstract described the correlations, of course, but correlations indicate only the strength of a relationship between variables and say nothing about causality. It’s unfortunate that authors of correlational studies aren’t required to remind their readers (and themselves) of this in every other paragraph they write. Actually, a better requirement would be that authors of correlational studies have to write two versions of their papers – one where catastrophizing and depression predict pain and another where pain predicts catastrophizing and depression, and the audience gets to choose which one to read.
But, this is old news and we’re all tired of reading this useless drivel. However, I’m not apathetic about it and am still capable of being really ANGRY that anyone is wasting precious research dollars on demonstrating the obvious. I hope that we US patients and carers continue strongly pressuring the NIH and CDC to fund “real” research and stop pissing away the few cents they allocate to us on these crap correlational psych studies that comprise the majority of published research on this disease. It’s really important to keep up the pressure.
Only tangentially related to the above, I still have some hope right now for 2 reasons, despite the horrors of what the WPI is doing to Dr. Judy and how greatly I loathe them for leading us down the garden path.
The first reason for hope is seeing the difference that Dr. Jamie’s gentle treatment interventions are making for my daughter. She (my daughter) has been on an uphill trajectory since we first saw Jamie in Oct., who started her on Deplin, the high-flow oxygen and began the process of weaning her off the massive amounts of worthless meds previous docs had prescribed. It’s even more exciting to see the positives from the neurofeedback and hbot sessions over the past couple of weeks. As one sign of improvement, we actually went out to dinner as a family 2 nights ago, and talked and laughed throughout, with my daughter even sitting on a bar stool for the meal! I truly don’t remember the last time she was able to go out for dinner. Not to mention the huge improvements in her cognition, the huge reduction in her dizziness and almost complete elimination of POTS fainting, decreased pain, and the delightful resolution of the depression that comes along with being 25 years old and having no life, etc. And, we’re not “done” yet. Jamie has more ideas up her sleeve, which she’s been describing in her blogs here, so we’ll see how much further we can go.
I’m describing our personal, very positive experience with Dr. Jamie’s treatment ideas because I think they’re worth disseminating and testing as widely as possible. The thing I’d like to see happen would be to obtain funding for a multi-provider set of clinical trials for these treatments. This project is something I could be passionate about and was the kind of project we were led to think would be forthcoming from the WPI. There ARE other institutions. Could we “sell” our own local docs on trying out these treatments systematically, could we harass a funding agency of any type into paying for the research, and could we structure it so that Dr. Jamie doesn’t collapse from working on it? I think a very good start would be to encourage our local docs in the strongest possible terms to read this blog, join Jamie’s forum, call her – for us to start the conversation with our local family docs whose practices are filled with patients like us, make it easy to collect the data, and see what kind of pilot results we could come up with as the basis for a research proposal. I could be passionate about this.
On another complete tangent, the second reason I have hope is that I’m a total techno geek and the developments in the technologies available to study diseases are knocking my sox off. The toys available in Lipkin’s lab (where there are also many bio samples from us now, hehehe), in the labs at Stanford, being developed at other research institutions – I just can’t help but believe that the time left until our specimens and those toys come together in a fruitful way is increasingly short. I’m passionate about staying as loud as possible to encourage the application of those new technologies to us. We DID flex our muscles effectively with the XMRV studies, at least in getting attention paid to the RV hypothesis. I’m not done with it. But I’m also not satisfied at all that we deserve much more attention, and especially with these new technologies, to find out what “it” is.
We’ve taken another beating. We’re licking our wounds…again. But our lives, our families’ lives, and possibly the lives of many, many others are still at stake.
Let’s keep yelling!
What have Lipkin’s toys to do with this if they are used in a fashion that is not appropriate for finding a gamma retroviruses at a low titre? Dr Lipkin is not testing for the NIH study anyway.
“where there are also many bio samples from us now”
If you do mean the NIH study, the clinicians are able to use any criteria of their choosing. That doesn’t mean there will be a single person in the NIH study with the same disease as anyone who was in Lombardi. I would have throught most parents would be incredibly angry at the way the virologists have acted.
If you think the truth needs to come out, please sign today!
http://www.change.org/petitions/investigate-possible-wpiunr-misuse-of-taxpayer-funds
Petition to Investigate Possible WPI/UNR Misuse of Taxpayer Funds
This Petition is sponsored by the International M.E. Association.
Petition to Investigate Possible Misuse of Taxpayer Funds by the Whittemore Peterson Insitute/University of Nevada, Reno
WHEREAS, taxpayer funds have been awarded to the Whittemore Peterson Institute/
University of Nevada, Reno (WPI/UNR); and
WHEREAS, the Founder and CEO of theWPI/UNR, Annette Whittemore, is being investigated
by the Federal Bureau of Investigation (FBI) for financial misdeeds; and
WHEREAS, many people who suffer from Myalgic Encephalomyelitis (M.E.) and other US taxpayers and other interested individuals are concerned that their taxpayer funds may be misused by this Institute; and
WHEREAS, WPI/UNR has already received taxpayer funds since firing their scientist competent to serve as Principle Investigator for a grant, for which funds no public accounting has been given; and
WHEREAS, Founder and CEO Annette Whittemore and all other employees of the WPI/UNR have refused to answer any taxpayer questions as to the whereabouts and uses to which said taxpayer funds have been and are being spent
WE, United States taxpayers and other concerned individuals, hereby request the
National Institute of Allergy and Infectious Diseases and
Matthew J Fenton, Ph.D.; Acting Director; Asthma, Allergy and Inflammation Branch, NIAID;
and
the United States Congress to
INVESTIGATE THE POSSIBLE MISUSE OF UNITED STATES TAXPAYER FUNDS
by Annette Whittemore, Founder and CEO of the WPI/UNR, including all taxpayer funds received by the WPI /UNR after the firing of its only scientist competent to serve as a Principle Investigator, Dr. Judy Mikovits, on Sept. 29, 2011, for attempting to prevent misappropriation of funds under NIH/NIAID grant project number 5R01AI078234-03: “New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome.”
.
This investigation must include those funds allocated to NIH/NIAID grant project number 5R01AI078234-03: “New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome” .
This investigation must include, but is not limited to, all funds received from the U.S. government which were used by WPI and/or the University of Nevada, Reno, for the purchase of scientific equipment.
FURTHER, WE, United States taxpayers and other concerned individuals, hereby request the
National Institute of Allergy and Infectious Diseases and
Matthew J Fenton, Ph.D.; Acting Director; Asthma, Allergy and Inflammation Branch, NIAID; and
the United States Congress to
THOROUGHLY INVESTIGATE THE APPOINTMENT OF VINCE LOMBARDI AS PRINCIPLE INVESTIGATOR (PI) OF THIS GRANT
including but not limited to Dr. Lombardi’s education, experience and skill in biomedical research. and Dr. Lombardi’s conflict of interest as a co-owner of VIP Dx commercial laboratory. In addition, we ask that every instance of Dr. Lombardi’s contribution to to NIH/NIAID grant project number 5R01AI078234-03: “New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome” be investigated and proof of such contribution be given to us in public including any notes from each and every experiment in which he participated, in addition to every page of any notebooks of Dr. Lombardi which refer to any experiments performed pursuant to the referenced grant.
AND
WE THE UNDERSIGNED US taxpayers and other interested individuals, hereby request
National Institute of Allergy and Infectious Diseases and
Matthew J Fenton, Ph.D.; Acting Director; Asthma, Allergy and Inflammation Branch, NIAID; and
the United States Congress to
DELAY THE DISBURSEMENT OF ANY FURTHER TAXPAYER FUNDS to WPI/UNR UNTIL THE REQUESTED INVESTIGATIONS ARE COMPLETED AND THE RESULTS OF SUCH INVESTIGATIONS MADE PUBLIC.
I’m in the UK, and used the local MS society’s hyperbaric chamber. Part of the sign-up procedure was to obtain a letter from my doctor to say that there were no medical contra-indications to the therapy. I did three dives, suffered with ear pain and problems due to the pressure, and quit. Getting there and back was a problem, too. I want a concentrator!…
Despite the car crash that is the current state of received research opinion, the Lombardi paper has produced strong patient networks online. The best revenge is to make energetic (within our limitations) progress to the good.
Having said that, the benefits paid to sick people in the UK are under attack, and just now I’m spending most of my time helping people negotiate that maze, as the powers that be put in new man-traps and cut off lifelines…
Here’s a few neuro-mice-rv refs
Kay DG, Gravel C, Pothier F, Laperrière A, Robitaille Y, Jolicoeur P. Neurological disease induced in transgenic mice expressing the env gene of the Cas-Br-E murine retrovirus. Proc Natl Acad Sci U S A. 1993 May 15;90(10):4538-42.
Retrovirus-induced motor neuron disease of mice: molecular basis of neurotropism and paralysis.
http://www.ncbi.nlm.nih.gov/pubmed/1649546
Spinal cord metabolic changes in murine retrovirus-induced motor neuron disease.
http://www.ncbi.nlm.nih.gov/pubmed/6318918
Neurologic disease induced by polytropic murine retroviruses: neurovirulence determined by efficiency of spread to microglial cells.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC191765/
Google will return more, using the search term retrovirus induced neurological Disease of Mice or similar…
That’s hysterical! I’m in Pevensey! Close, but no cigar. I got all excited when I saw Kate was in Shoreham – I guess that was an approximate address too.
No I’m on the other side of the south downs lol!!! Never mind.
WPI’s annual report is out and up online. It must have cost a fortune, with artwork and graphics to dazzle corporate donors. It even has the American flag flying on a page! I’m not analyzing it now but careful scrutiny, including of the expenses and income should be done. Some interesting things are in the budget … some definite losses of income but offset by “business income,” whatever that is.
But one thing that really cut to the quick and seems very self-serving and pompous, as well as insensitive, is the inclusion of a quote by Anne Frank, enlarged and with a graphic.
I mean, really, are they really using a statement by a world-known victim of the Holocaust to raise money? How arrogant and phony and commercial is that? Have they no concern about actual victims of the Holocaust and their relatives? How can anyone use Anne Frank’s memory to raise money? This boggles my mind and sends WPI over the edge of the earth, in my opinion, doomed to sheer commercialism with no integrity and principles. Have some respect for those who perished in that horrendous catastrophe.
The Holocaust never ended — it is now global.
And ME is a Nazi bioweapon.
Simple physics—Suffering is a harvestable energy.
Earth is a human pain (energy) farm.
And in the process of harming others, the body even adds its own cocaine metabolites .
The whole thing works on addiction (to everything under the sun)
Anne Frank as the poster child for ME !
What will it take to open the TRUE eyes and ears of this tortured species ?
P.S. I’m not from Haverstraw, N.Y., by the way.
It thought I was in LA and I am in Hawaii. The inaccurate WordPress plug-in has been disabled.
hi jamie just giving a nod to my comment above which you may not have noticed, would be really interested in your info re the technical stuff as I am a bit baffled and eager to find out
answered above, em. sorry to be slow. have been too busy to keep up with my own blog lately:).
Thanks for another great blog Jamie – you seem to be the one high quality constant in our ever changing (and it seems at times,worsening) situation.
As someone once said “Our apathy is the gateway to their opression of us”. So I would like to take this opportunity to say that I think our priority just now should be to all rally behind Judy and help her in any way we can (be it financially in terms of contributing to her legal fund) or even just sending cards/letters of suppport and spreading the news about her work to other sufferers and the world at large, most of whom are blissfully unaware of the existance of the finding of the third human retrovirus and how it might one day impact them or their families .
I feel very strongly that if Judy is scapegoated, we as a community, will all suffer, the research into retroviruses will suffer greatly without her knowledge and expertise and other scientists will be reluctant to take up our cause. We don’t want to go back to a situation where we are just endlessly researching the ‘downstream’ effects of RVs and going nowwhere really in terms of effective treatment for the next 20-30 years. That would be truly tragic. Her plight affects our plight greatly.
As you near the inconvenient truth of this illness the fight begins to get very nasty. Of the 4,500 research papers published about this illness so far, it is interesting to note that the only 2 (to my knowledge) that have been withdrawn are the ones to do with a retroviral link to ME. This it seems is the biggest threat to the powers that be and they will go to any lengths (as we have so painfully witnessed) to try and buryit/ put the breaks on. So we know that we’re on the right tracks with this!
First they ignore you
Then they laugh at you
Then they fight you
Then YOU win!
We are at line three and we have to be prepared for an almighty fight back – saving Judy Mikovits is such an important part of that. Being resonable with sociopaths (i.e. the powers that be) gets you nowhere. We can look at how the HIV positive community were able to effect change in the early 1980s for inspiration (and it was not by being ‘reasonable’).
Where do we send either emails or snail mail to Judy Mikovits or to someone who will gather them and forward them to her? Yes, we should give her our support. No matter what happens with XMRV in the long run, she was a pioneer. She did all she could. She had compassion for people with CFS. She was pilloried and then sued and jailed, her own work taken from her.
So let us know where to send support and encouragement messages.
Here are several ways to get in touch with Dr. Mikovits. To send direct mail, send to
Dr. Judy Mikovits, 2031 Jamestown Way, Oxnard, CA 93035 USA
There is a special page set up on facebook called Justice for Judy, here is a link: http://www.facebook.com/#!/pages/Justice-for-Judy-Mikovits-Legal-Fund/213326632079072 This page is about the legal fund set up to help with the legal bills, here is a direct link to that fund: http://tinyurl.com/MikovitsLegalFund
Another page is set up for messages of support: http://www.facebook.com/#!/groups/131858756922968/
Please don’t hesitate to use any of these contacts.
Lilly Meehan, Ventura, CA
Cheques should be made payable to ‘Judy Mikovits Legal Fund’ (see Facebook page) and sent to 2031 Jamestown Way, Oxnard, CA 93035 USA. I guess this would also be the same address to send any letters of support to.
Yes, Maise, that is the same address for any letters or cards. Here is her email, posted with permission: jamikovits@me.com
Phone is also fine too, 805 797 6967, can also text to this number. Shared with permission. Pacific Time.
Anthem for “In The Belly of the Beast” >
http://www.youtube.com/watch?v=HlhnO0_0Wp0
Love it!
Well, I don’t do Facebook, due to my being technologically challenged, and triply so with CFS. And if I call Judy Mikovits at this point, I’ll cry. So I’ll send her an email and find a way to donate to her legal fund. I hope she knows that people with CFS consider her a pioneer and are grateful to her and proud of her. As a woman, I am doubly proud of her hard work and dedication to CFS sufferers.
I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and NON-HIV AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFIDS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFIDS and NON-HIV AIDS are basically the same mysterious immune disorder.
Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFIDS/ME and AIDS. Most people with CFIDS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.
Anyone with CFS, who does not consider the possibility that CFIDS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.
Why isn’t CFIDS/ME a reportable disease overseen by our public health department? Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn’t anyone else but me, very clearly see, the catastrophic cover-up going on here?
Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFIDS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 – 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS pandemic —> TENFOLD.
http://www.cfsstraighttalk.blogspot.com
Levomefolic acid (INN) (also known as 5-MTHF and l-methylfolate and sold under the brand names Metafolin and Deplin) is the natural, active form of folic acid.
5-MTHF is metabolized to L-methylfolate, but is not the same thing, though it is often mislabeled as the latter. L-methylfolate is available over the counter, though most products are 5-MTHF, if you look carefully, but in very small doses (e.g. 800 mcg). In addition to Deplin, L-methylfolate is available by prescription as Cerefolin, containing B12 and NAC, as well as L-methylfolate 5.6 mg. Deplin comes in 7.5 and 15mg tablets. Cerefolin is indicated for cognitive impairment in the elderly and Deplin for depression. 5-MTHF and folinic acid are also worth a try, but there are patients who don’t metabolize folic acid properly, who improve with high doses of L-methylfolate, but not the precursors. I prescribe Deplin with B12 and a daily B-100.
Any chemists out there? Is the calcium salt of 5-MTHF the same compound as L-methylfolate? Or is this false advertising? Is Rich Van K reading? Anyone?
“Metafolin® ((6S)-5-methyltetrahydrofolic acid, calcium salt or L-methylfolate) is the pure stable crystalline form of the naturally-occurring predominant form of folate.
Folates are water-soluble B-vitamins, which play a key role in central metabolic pathways. Folates are, for example, needed for cell division or cell repair. Metafolin® is L-methylfolate, the body’s preferred form of folate. Metafolin® is directly usable by the human organism, directly involved in lowering homocysteine blood levels, and the only form of folate able to cross the blood-brain barrier.
Metafolin® – invented by nature, optimized by Merck & Cie, Switzerland.”