You are here: Simmaron ResearchImmune SystemIan Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

December 26, 2015

Ian Lipkin flew to Lake Tahoe this December to fundraise for work he’s doing with the Simmaron Research Foundation. In a talk covering his virus hunting career, the threat of pathogens to humanity, and his work with chronic fatigue syndrome (ME/CFS), he dropped a bombshell: he stated that he believes it’s possible to solve ME/CFS in three to five years. 

On that hopeful note, let’s learn more about Dr. Lipkin, his work, and his collaborations with Simmaron.

Dr. Peterson’s Introduction

Lipkin’s Columbia Center for Infection and Immunity (CII) has established close ties with the Simmaron Research Foundation. Only a couple of months before, his chief collaborator, Mady Hornig (and Simmaron Scientific Advisory Board member) had given a talk.  Now Ian Lipkin was here.

Dr. Peterson started his introduction of Ian Lipkin by noting that he’d known him since they crossed paths in the 1980’s when Dr. Peterson sent him patients suffering from HIV/AIDS.

Lipkin has changed the ways researchers identify pathogens

Lipkin has changed the ways researchers identify pathogens

Ian Lipkin began a new era in pathogen detection when he became the first researcher to isolate a virus (Borna disease virus) using genetics.  He identified the West Nile Virus that had throw New York City into a panic, developed technologies to identify SARS and then hand carried 10,000 test kits to Beijing at the height of the outbreak. He most recently discovered a highly dangerous virus that recently jumped into humans called MERS (Middle Eastern Respiratory Syndrome Coronavirus).

Lipkin has pioneered many technological breakthroughs in finding pathogens including the use of MassTag-PCR, the GreeneChip Diagnostic, and High Throughput Sequencing. His latest breakthrough is the development of a new screening technique that enhances researchers ability to find viruses 10,000 fold.

Called the top virus hunter in the world, Ian Lipkin runs the Center for Infection and Immunity at Columbia, and is the director of the Center for Research in Diagnostics and Discovery (CRDD) at the NIH. He also worked closely with Steven Soderbergh on his film Contagion.

Ian Lipkin Talks

Who says brilliant scientists can’t be a hoot to listen to as well? Ian Lipkin’s presentation was both enlightening and at times hilarious. Exhibiting a wry sense of humor, Lipkin poked fun at himself and virtually everyone around him.

The last time he was in Lake Tahoe, he said, was in 1984 and he hearkened back to the HIV/AIDS patients Dr. Peterson sent him in the early 1980’s.

“When you come to a fork in the road – take it!”

He stated the guiding principle in the search for pathogens could be summed up by the great Yogi Berra’s adage “When you come to a fork in the road – take it!”.

HIV/AIDS was the beginning of many changes. Even after the medical community knew it was being passed in the blood it still took them 2 1/2 years to find it. (In a Discover interview,  Lipkin noted that he ran the first clinic in San Francisco that would treat HIV/AIDS (then called GRID) patients with neurological problems. Note an iconoclastic element to Lipkin that showed up early in his career: he was willing to see patients others wouldn’t. Check out Lipkin’s fascinating story of how HIV/AIDS lead to him to study infectious diseases.)

Lipkin-chronic-fatigue-syndrome

Lipkin first showed a willingness to support underserved groups early in the HIV/AIDS epidemic

Lipkin then worked on a virus which demonstrated the effects a persistent viral infection can have on the central nervous system.

Next, in another story with possible overtones for chronic fatigue syndrome (ME/CFS), he investigated patients who’d come down with what appeared to be a mysterious psychiatric disorder. It took him two years but using a new method involving genetic cloning he uncovered the Borna disease virus. It was the first virus discovered using genetic means.

The Borna virus discovery was a game-changer for pathogen community. Jump forward thirty years(after it took the medical community almost three years to find HIV, and viruses are being discovered using molecular means every week. The Center for Infection and Immunity itself discovered 700 new viruses from 2009-2015.

Lipkin was aware of and interested in ME/CFS in the eighties but there was no money. In 1999 he and Britta Evangaard found no evidence of the Borna disease virus in ME/CFS. From there we jump forward to 2010 when NIH Director Francis Collins tasked Lipkin to determine if a retrovirus, XMRV, was causing ME/CFS. XMRV turned out to be a laboratory artifact, and the paper was retracted – something Lipkin said was not all that unusual in science. (He emphasized that he and Dr. Peterson were very careful to put out studies that would stand the test of time.)

The XMRV discovery tanked but proved to be a boon for ME/CFS by heightening the attention around it. Lipkin had kept an eye on ME/CFS for years and after being hired by the Chronic Fatigue Initiative to take it on, he was back in a big way.

In the next portion of his talk he turned to viruses and humans.

Viruses and Humans

How are most viruses getting into humans? From animals. After it’s jump from primates to humans, HIV is, of course, the most familiar example, but viruses are also escaping from bats, birds, pigs, rodents, insects and even camels into humans.

A sea change in the viral field occurred in 1999 when a mosquito-borne virus – the West Nile Virus – had the audacity to attack the residents of the New York City. Lipkin shifted his work from the West to East coasts to search for the virus and ultimately identified it. As the outbreak spread, it got the attention of Senator Joesph Lieberman who sponsored the first big initiative to learn how viruses spread from animals to humans. Politicians, Lipkin noted, can be important allies.

Infections

Most pathogens have yet to be identified by humans.

New York City may be an ideal transit stop for new viruses. Twenty-one million passengers traveling to and from 72 countries pass through New York city airports every year. Animal products including bushmeat – all potentially contaminated with nasty viruses – pour into New York City regularly.

Many more viruses are undiscovered than have been discovered. A survey of one species of bats found fifty-five viruses, fifty of which were new to science. Lipkin estimated 320,000 viruses were still unknown and they’re bumping up against humans all the time. Lipkin next demonstrated how quickly they can jump from animals into humans.

Bats –  Called to investigate an ill Saudi Arabian man (with four wives), he uncovered a new virus called MERS (Middle East Respiratory Syndrome) similar to those found in bats. (Asked if there were any bats in the area, he was told no. The next video showed bats flying every which way in the area :)). If the bats weren’t biting the humans, though, how was the bat virus jumping into people?

Lipkin found MERS was present in about 75% of the camels in the country. Further research indicated that MERS jumped into camels in the 1990’s, and then rapidly escaped into humans around 2010.

MERS

Since its escape into humans around 2010 MERS has spread to 26 countries.

MERS is not particularly easy to transmit but once it gets transmitted, watch out. Death rates are high. It took just one Saudi Arabian to spread MERS to South Korea this year where it killed several dozen people, put several thousand others into quarantine and basically threw the country into a panic. Schools were closed, tourists stopped coming, and parts of the economy slumped as South Korea fought off the virus. It has since been found in 26 countries. It’s the kind of virus that keeps public health officials up at night.

It’s not surprising that Lipkin is wary of pathogens. He noted that he rarely shakes hands but darting a glance at Dr. Peterson said he’d made an exception that evening.

(If you haven’t seen Steven Soderbergh film “Contagion” and can handle apocalyptic scenario’s you might want to give it a try. Lipkin consulted extensively on the movie which involved a worst-case scenario of a virus wiping out much of humanity. The film was praised for its scientific accuracy. (Spoiler alert – we do survive in the end :)).

Ticks –  Coming closer to home Lipkin believes chronic Lyme patients who are not recovering from antibiotics may have gotten another infection from the ticks. He found that over 70% of the Ixodes scapularis ticks associated with Lyme disease carried at least one pathogen and 30% carried more than one in New York. Last year he identified a rhabdovirus (Long Island tick rhabdovirus) new not just to ticks but to science itself. A small survey suggested that 15% of residents may carry antibodies to the virus.

Rats- Lipkin’s  study of New York City’s second most common resident – rats – revealed they carried an amazing array of pathogens including Escherichia coli, Clostridium difficile, and Salmonella enterica, Bartonella spp., Streptobacillus moniliformis, Leptospira interrogans, and Seoul hantavirus.

In one of his many asides (did you know he loves Sinatra?) Lipkin referred to the hamburger and French fries lunch that he and Peterson  usually have. (“Do as we say not as we do” he said). How does Lipkin reportedly like his meat? “Burn it” he tells the waiter. The man is taking no chances – he knows too much.

Infection and Disease

timing-infections-lipkin

The timing of an infection is just one of many factors that determine the effects it will have.

A pathogen is just one of the players, however, in a vast swirl of factors which ultimately determines whether one is going to have a chronic illness. Timing, for instance, is a key factor.

If you expose a mouse to a pathogen at one stage of pregnancy, it’ll stop moving around its cage. If you expose the same mouse to the same pathogen later in pregnancy, it will run round and around its cage unceasingly.

A large autism study underscored the complex role timing plays in humans. The 120,000 person autism birth cohort study found that if a mother comes down with a fever after the first trimester, her chances of giving birth to a son with autism go up three-fold.  If she treats the fever with acetaminophen, her chances of giving birth to an autistic child drop significantly.  If she takes acetaminophen for any other problem than a fever, her risk of giving birth to an autistic child goes up again.

Three to Five Years – An ME/CFS Timeline

How does all this relate to ME/CFS? Likpin cited the findings of their work to date.

  • The suspected pathogens don’t appear to be the problem (the CII is reportedly looking further at herpesviruses.)
  • Evidence suggests altered microbiomes (gut flora) are present
  • Striking differences in immune expression between shorter and longer duration patients suggest profound immune changes have occurred
  • Preliminary evidence suggests that levels “X” and “Y” metabolites and, at least, one immune protein are significantly altered in ME/CFS. (Lipkin embargoed this information pending publication of the paper. One of them is a shocker.)

Lipkin emphasized, though, that ME/CFS is not a one-size fits all disease. For instance, it’s possible that fungi may be a problem for some patients. That’s an intriguing idea given the recent fungi funding in Alzheimer’s disease published in Nature.

Lipkin timeline chronic fatigue syndrome

Lipkin’s timeline for solving ME/CFS given enough resources – a mere three to five years.

Then Lipkin made his bold declaration “We’re going to solve this in three to five years”. It came with a significant proviso “provided the resources are made available” but indicated that he believes ME/CFS is a mystery that can be cracked fairly quickly.  That sounds really fast, but Lipkin’s time-frame is not that far off from Ronald Davis’s 5-10 year time-frame (provided he gets the resources as well.) (or Dr. Montoya’s).

These eminent researchers believe that given the technology present today we could understand ME/CFS fairly quickly – if enough resources were brought to bear.  Lipkin pointed to a slate of researchers in his lab working on ME/CFS to signify the major shift he’s seen happen in just the last couple of years. He said “I couldn’t have gotten them five years ago”.

He highlighted two places the patient community can make an impact:

  • Funding Pilot Studies –   The community can fund pilot studies which can be turned into big grants
  • Advocacy – Lipkin is a savvy researcher. He knows how the NIH works, and once again he emphasized the need for the ME/CFS community to push harder legislatively – to talk to their representatives in the House of Representatives, in particular – and get them to push the NIH for more funding.

Lipkin’s Bucket List

Ian Lipkin has clearly developed a special relationship with ME/CFS, Dr. Peterson, the Simmaron Research Institute. He hadn’t been in the Lake Tahoe area for decades, yet he and two of his assistants had flown across the country to support the Simmaron Research Institute’s spinal fluid work. He was even shaking hands.

lipkin bucket list chronic fatigue

Lipkin’s Bucket List contains two items: solving ME/CFS is one of them.

I shook my head – not for the first time – about Ian Lipkin. How had we gotten so lucky? Lipkin oversees the work of 65 researchers in the U.S. and 150 more across the globe. The New York Times reported that on any given day his lab had 140 viral research projects underway. The head of the National Institute of Allergy and Infectious Disease, Anthony Fauci said, “Lipkin really stands out from the crowd.”

Yet, here he was in the Lake Tahoe area in mid-December exhorting the audience to support an important Simmaron study that he believed needed funding.

What had driven the “The World’s Most Celebrated Virus Hunter” to take on our disease? I asked his assistants. They told me that Ian Lipkin wants to do two things more than anything else before he retires: he wants to solve ME/CFS, and he wants to solve autism. We’re on his bucket list.

That floored me even more (:)) so I asked – but, but…..doesn’t  he care what other people think about this neglected disease? That question left them almost gasping for breath. After they had been able to calm down, they assured me: no Ian Lipkin doesn’t care.

The Simmaron Research Foundation’s Next Spinal Fluid Study

Lipkin was at the event to support the Simmaron Research Institute’s next spinal fluid study. The results of the first one – the most extensive spinal fluid study ever done in ME/CFS – were eye-opening. Using Dr. Peterson’s suggestion to separate atypical from typical ME/CFS patients, and focusing on patients with a longer duration illness, they’d found evidence of an immune dysregulation almost equal to that found in MS. The difference was that instead of being raised, the cytokine levels were reduced in ME/CFS.

That finding surely left a big smile on Lipkin’s and Hornig’s faces.  Earlier they’d found evidence of a profound reduction in immune functioning in the blood of later-duration ME/CFS patients.  Now a similar reduction was showing up in their spinal fluid. These unprecedented findings suggested they were uncovering system-wide problems.

No wonder Lipkin was eager to begin a new and larger spinal fluid study: it’s part of achieving his bucket list.

SR_Donate_6.9.14_1

Triple Your Support! – Between now and Dec 31 triple your support for Ian Lipkin’s work with the Simmaron Research Foundation (SRF). A generous donor is offering to match $2 for every $1 donated before Dec 31. The funds will support the SRF’s collaborations with Drs. Ian Lipkin and Mady Hornig at Columbia University.

 

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55 Comments

  • Donna

    December 26, 2015 at 7:29 pm - Reply

    This is very promising news! I hope to win millions in the lottery to support this initiative!

    • Cort Johnson

      December 26, 2015 at 7:36 pm - Reply

      I hope you do….:)

  • Nico

    December 26, 2015 at 8:09 pm - Reply

    Thank you, Cort, for continuing your blogs – and giving us all some hope for the New Year – and thank you also to all the researchers!

  • Cort Johnson

    December 26, 2015 at 8:10 pm - Reply

    Javen had trouble leaving a comment here so he sent me one via email.

    CORT, THIS IS WITHOUT ANY DOUBT THE BEST NEWS EVER FOR US. I CANT SEEM TO LEAVE A COMMENT ON WEB SITE. AS I WAS READING THE ARTICLE THE MOVIE 2001 CAME ON AND IT SIGNIFIED THE BEGINNING…I WOULD HOPE DR. CHENEY WOULD BE A PART OF THIS AS HE HAS WORKED TIRELESSLY HIMSELF ALONG WITH PETERSON, KLIMAS, LAPP, ETC, ETC. I AM SENDING THIS TO MY COUSIN IN PHILLY WHO IS A JUST RETIRED ER DOCTOR WHO OF COURSE KNOWS MANY OTHER DOCTORS AND MAYBE SHE CAN SHINE SOME LIGHT ON SOME OF HER COLLEGUES. WHATEVER, THIS REPORT IS THE MOST OVERWHELMING AND PROMISING EVER. I ACTUALLY REALLY BELIEVE IT WILL BE DONE. THESE DOCTORS NEED THE “MANHATTAN PROJECT” FOR THEIR RESEARCH AND THEN IT COULD JUST TAKE A YEAR…SINCERPJAVEN@gmail.com

  • Cheri

    December 26, 2015 at 8:46 pm - Reply

    Great article Cort. Thank you. I think overall this has been a very good year for ME/CFS. Can not wait to see what happens next year. I am really hoping Lipkin gets to check those two off his bucket list. Nice to hear that reseachers are supporting each other and doing what needs to be done to find answers. No matter who finds the cause(s) of this nightmarish illness I will always be grateful to all (doctors, researchers and advocates) who have taken the road less travelled and believed in us.So filled with hope. Fingers crossed for 3 years.

    • Cort Johnson

      December 26, 2015 at 11:20 pm - Reply

      So nicely put Cheri :)

  • Marilee Mouser

    December 26, 2015 at 9:06 pm - Reply

    OMG, the best Christmas present ever!!! I hope, I hope, I hope!!

  • Gail Williamson

    December 26, 2015 at 10:27 pm - Reply

    Cort,

    Is there a recording of Dr. Lipkin’s talk we could listen to? Thank you.

    • Cort Johnson

      December 26, 2015 at 11:20 pm - Reply

      Not that I know of unfortunately.

  • weyland

    December 26, 2015 at 10:46 pm - Reply

    “The suspected pathogens don’t appear to be the problem (the CII is reportedly looking further at herpesviruses.)”

    Did he state which pathogens these are and is this statement based on anything other than the plasma study? One of the “suspected” pathogens has already been repeatedly found in brain, muscle, and GI tissue of ME patients. If Lipkin has not looked at these tissues then he has not ruled anything out.

    Why would they be looking at herpes viruses if they don’t appear to be the problem? Why waste time looking at herpes viruses at all when they are ubiquitous and cannot be the agent responsible for outbreaks. The agent we are looking for is not a novel pathogen, it is passed through casual contact, has a short incubation time, is difficult to isolate even during the acute phase, and has extensive tropism. A pathogen that fits this description, the enterovirus, is the only pathogen to be recovered from the tissue of live and dead ME patients, years after onset.

    • Gina B

      December 27, 2015 at 1:46 am - Reply

      I am also interested in enterovirus. Sudden onset 6/16/93 and Dr Chia was willing to look at the slide of inflammation my GI dr was sure was cancer but wasn’t. It was ruled an immune inflammatory stricture, which required a resection of my right colon. Because I didn’t have a fax I wasn’t able to sumit authorization to send the slide to Dr Chia (I have already tested positive for cosackie 123 and 5 yet Dr Lipkin said he didn’t see many hemicolectomy’s in CFS). Wondering if Dr Chia could be involved as well as I also have Ebv and all the other culprits in that family as well. Would he now be interested in colon slide I wonder? Really didn’t seem interested in tissue slide in 2012.

    • Cort Johnson

      December 27, 2015 at 7:16 pm - Reply

      He didn’t state anything about more pathogens. I heard Mady Hornig state that when she was in Incline.

      Lipkin stated during the Q&A that he would LOVE to have tissue samples: they’re just so darn hard to get.

  • Linda

    December 26, 2015 at 11:10 pm - Reply

    This is the best news we have heard in a long time

  • Donna

    December 26, 2015 at 11:51 pm - Reply

    “Advocacy – Lipkin is a savvy researcher. He knows how the NIH works and once again he emphasized the need for the ME/CFS community to push harder legislatively – to talk to their representatives in the House of Representatives, in particular – and get them to push the NIH for more funding.”

    Cort – Are you aware of any petitions that we can sign for this purpose?

    • Caledonia

      December 27, 2015 at 5:05 pm - Reply

      Sign this to send a letter to your Congressional representatives:

      https://oneclickpolitics.com/messages/edit?promo_id=1883

    • Marilee Mouser

      December 27, 2015 at 6:35 pm - Reply

      When I read that Chol Pak (spelling??) had read every letter/email sent re: budget cut for ME/CFS, I renewed my letter writing commitment. I imagine most human beings read letters that are addressed to them! So, when I read something I often write a letter. Last one was to Dr. Francis Collins (contact info is easy to find online!!). Yes, we need to advocate and this is how I am doing it!

    • Cort Johnson

      December 27, 2015 at 7:09 pm - Reply

      There are some petitions on MEAction including this one

      Check out, follow and participate with this group – http://www.meaction.net/us-action-working-groups/. For more on them see here

  • Dennis Mayer

    December 27, 2015 at 1:04 am - Reply

    I have a good friend who has had this disease for over 10 years and this is great news. Is there a way to get updates on the progress of the research?

    • Cort Johnson

      December 27, 2015 at 7:15 pm - Reply

      I promise you everything Lipkin and Simmaron does will be promptly covered in the blog. So if you’re not signed up for it that would be one way to stay on top the news.

  • taniaaust1

    December 27, 2015 at 4:28 am - Reply

    This was an awesome article and will help bring hope to many, thank you.

    I really hope Ian Lipkin gets to cross these things off his bucket list, I would think it would have to be his greatest achievement if he manages to do this.

    • Cort Johnson

      December 27, 2015 at 7:13 pm - Reply

      I agree!

  • A.

    December 27, 2015 at 6:32 am - Reply

    Was the spinal fluid study in which they found “immune dysregulation almost equal to that found in MS” CII’s previously-published study or one yet-to-be published?

    How do we designate on the form that our donations go to the Lipkin/Simmaron work?

    Great news about more researchers working with Dr. Lipkin on ME/CFS! Can’t wait to find out the reportedly shocking study results. I’m so grateful to each person working hard on this terrible disease. Love the idea of our community funding pilot studies.

    !

  • Linda

    December 27, 2015 at 9:40 am - Reply

    why has MS not been solved for decades yet this can be solved so quickly?

    • Cort Johnson

      December 27, 2015 at 7:12 pm - Reply

      I don’t know but then again I am not Ian Lipkin :)….Maybe if ME/CFS is in the gut it will be easier to fix (???). Even if he’s wrong I’m encouraged that he’s willing to make such a bold statement. It indicates he’s pretty optimistic based on what he’s seen.

  • Simon McGrath

    December 27, 2015 at 6:15 pm - Reply

    Great article, Cort, and great news. We are very lucky nailing mecfs is on Ian Lipkin’s bucket list. Though I think Linda makes a good point about the intractability of MS, which highlights how hard pulling this off might be.

  • Marilee Mouser

    December 27, 2015 at 6:39 pm - Reply

    Cort, do we understand what “solve” means? Understanding what is happening would be a tremendous start….but getting to treatment for those of us who are ill…finding a drug or something else….any time frame??? Perhaps I’m asking someone to look in a crystal ball??

    • Cort Johnson

      December 27, 2015 at 7:10 pm - Reply

      I had the same question. My guess is that it must mean “understand”….Unless another drug is already being used that could help; drugs take a long time to develop.

      • Cort Johnson

        December 27, 2015 at 8:23 pm - Reply

        I tell you though one of the embargoed gut findings is simply fascinating. It’
        s a very different look at ME/CFS and I think it ties in really well in a way that nobody else is really looking it. If the finding holds up be ready for a big surprise.

        • Mark

          December 27, 2015 at 9:49 pm - Reply

          Is there a publication date for that report?

          • Cort Johnson

            December 28, 2015 at 2:28 am -

            I imagine there is but I don’t know what it is. My guess is that it’s not that far off.

        • Gail Williamson

          January 31, 2016 at 8:02 pm - Reply

          Cort, have you heard anything more about the embargoed information?

          • Cort Johnson

            March 6, 2016 at 3:20 pm -

            Nope – I imagine that it won’t be long, though

  • Vanessa

    December 27, 2015 at 10:07 pm - Reply

    I have been diagnosed with CFS/ME 3 years ago. I would be happy to help in the research!

  • kathy

    December 27, 2015 at 11:44 pm - Reply

    I pray there is a cure!

  • Matt

    December 28, 2015 at 7:49 pm - Reply

    All in the gut? My CFS came down with a gut infection so yeah I can see that.
    Any one else get an itchy ass like me? Serious question…

    • Ann

      December 29, 2015 at 10:10 pm - Reply

      Matt Look for Candida or yeast infection. Diflucan can help but you will need to change your diet for permanent relief.

  • Carrie

    December 28, 2015 at 9:06 pm - Reply

    I’d gladly volunteer spinal fluid for him to study

  • Christine

    December 29, 2015 at 11:13 pm - Reply

    Can whoever reads these comments make sure he is looking at Autonomic Dysfunction especially Postural anomalies. I’m utterly convinced that this is at the root of my problem!

    • Cort Johnson

      December 30, 2015 at 1:13 am - Reply

      I hope that he is because I’m convinced that they are key as well.

    • Ann Swartz

      December 30, 2015 at 4:15 am - Reply

      Christine I spent 4 years with a Chiropractor and then 20 plus years off and on getting physical therapy. I will tell you what I have learned from this. First of all, Fibromyalgia is just a list of symptoms of a larger disease. Get a DNA test labeled Detoxigenomic. You will probably find that a gene is missing or it is referred to as absent (GSTM1).This gene is responsible for producing glutathione which is needed to detox the liver. As someone who has suffered a lifetime and has spent the last 40 years trying to understand this disease, I have written a short description of this disease and how it progresses over the years. I recently learned of Dr .Mark Hyman, who also is missing (GSTM1). Go to his sites and you will learn what to do in order to get your body to make glutathione . This disease is about toxicity. This disease began at birth. The severity of this disease depends on the environment you’ve been surrounded by all your life. I grew up on a farm where I was exposed to many toxic chemicals. At that time DDT was still being used and our house was sprayed for mosquitoes and flies. Our house was heated by wood burning stove. Most of the male members in my family smoked or used some form of tobacco. As early as I can remember I ached all over, always felt like I had the flu, stomach distress and I cried a lot. During my early teens or preteens I developed a humpback. At one point I was advised by a doctor to do some exercises. It was far too painful to stretch. I believe that early on I developed myofascial damage. I now know that the places that were causing all my problems was in the myofascial.. It was becoming inflamed and swollen due to excess toxicity that I was not able to eliminate due to my missing gene. As the years went on the damage became entrenched and using these particular muscles interfered with my nerves, especially the Vegas nerve. For about 40 years the research has been looking for a virus or an infection. Neither of the two is present. The hardened, glued together myofascial pulls on the Vegas nerve causing nausea, headache, excessive heat or excessive cold, rise or drop in the blood pressure, dizziness, pain and fatigue and more—. This is what is being called fibromyalgia. My neurological problems were triggered when the harden, glued together myofascial was triggered either by using this muscle are by exposure to a chemical that in turn put pressure on the myofascial and triggered a response in my head. Encephalopathy came about by the inflammation in my head and the brain problem I experienced—- headaches, feeling of pressure my head, spacey and dizzy, unsteady gait, halted speech, delayed ability to think of words when I need them and others was caused by putting pressure on the fascia and having it refer to my head and behind my eyes, especially right side of head. I am not sure yet where the epicenter or the beginning point of the myofascial damage started. I think it is someplace around my right side possibly near the liver are at the point of my right shoulder blade. I also believe there’s a possibility of Wernick’s encephalopathy without having consumed alcohol. The retention of excess toxins in the myofascial may have the same effects as alcohol. I started taking 1/2 ounce liquid thiamine about six months ago and I no longer have to take anything for pain. – I would like more people to get this test so that we can start moving this disease where it belongs. A liver disease. As I stated, excess toxicity in the myofascial is wrecking havoc with the autonomic system.

      • angela wilson

        January 21, 2016 at 4:13 am - Reply

        Hey Anna I’ve fybomalgia with all the many symptoms that go under the title plus CFS with all others symptoms to for 8 years now I’m beside my self with them all and don’t think I can take any more of it I’ve lost family friends whose ignorance to it all if a grandson11 who doesn’t understand and is slowly not coming to see me as much asicnt really do much with him because of it all he’s my life who I get out of bed for and struggle through it all if I loose him to this bloody illness there not much point going on my doctor crap and consultant its slowly killing me just last week rushed into hospital heart beating too fast /high blood pressure I sleep only 3 hours nightly so its gonna effect me physically have you any advice you can give me totelldocswhattotakeor do I was gonna suggest sleep study first and foremost thengod knows can you help with any thing I’m in united kingdom just small town and our nhshasnt got a clue about nothing plz help me if you can your obviously more know led gable than I am any little help would be appreciated kind regards Angela wilson xxxx

        • Ann Swartz

          January 30, 2016 at 4:41 pm - Reply

          The sudden spike in blood pressure and heart rate is caused by an exposure to a toxin. When my neighbors start a bon fire or burn leaves, etc. my blood pressure spikes to the point that I am taken to the emergency room by ambulance. If it is possible for you, see a chiropractor or physical therapist. They can relieve some of the pressure caused by the swelling of the myofascial. A toxic exposure will bring on all your symptoms. Go to some of the sites about Multiple Chemical Sensitivity. By observation you can learn what in your environment is causing your reactions. This is a very hard to live with, complicated disease but with enough information you can learn to create many more good days than bad. I had very little help from doctors, mostly had to do this myself after being diagnosed by a Clinical Ecologist, Dr. Theron Randolph, who is now being called the father of clinical ecology. I was diagnosed in 1978 with– — 1.
          multiple food allergies, severe 2. susceptibility to simple chemicals,
          severe 3. tension fatigue syndrome (before the term chronic fatigue
          was being used) 4. intermittent mental confusion 5. inhalant
          allergies, dust and mold 6. headaches, chronic related to number one
          and two above 7. intermittent bronchospasm is related to number one,
          two and five above 8. chronic myalgia’s (before the term fibromyalgia
          was being used) and arthralgia’s (before the term myofascial pain
          syndrome) related to number one and two above. I was told at that time
          I would probably never be able to live outside a controlled
          environment. Since there was no such place and I had limited resources,
          I just had to do what I could to survive. I set about trying to learn
          what I could about this disease and learn how to live with it. I’ve
          done years of research. Go to this web site http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
          Dr. Mark Hyman provides a list of nutrients needed to be taken to
          consistently boost glutathione which is needed to reduce our toxicity. Now that there is a test which I mentioned in my previous comment maybe the medical profession will start to show more interest. .I hope that this has been helpful. I have been where you are now and found it hard to believe that I could get better, but I did..

  • Lisa-Diane Joseph

    January 4, 2016 at 8:49 am - Reply

    I am so very interested in this research. I have or have had CFS, FIBRO, EBV, HERPES, IBS-D, etc. I have had a nerve & muscle biopsy & spinal tap. I would be willing to undergo these tests again if a researcher needed these tissues. The genetic factor is very interesting to me too. My environment too was very toxic growing up, but pathogens & immunizations overwhelmed my system eventually. I have been on disability for 25 years now solely because if CFS/FIBRO (and ME probably.)

  • EeVee

    January 19, 2016 at 10:40 pm - Reply

    Please please please I hope a (good) cure + cause will be found after having been sick for years. Had to give up work. I don’t also want to give up ” life” during the bad moments. This news gives me hope on the rare good moments. Sorry, can’t talk about good and bad “days” anymore, just “moments” or “few hours”.

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