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Lipkin Brings Disease Busting Technology to ME/CFS

Our biggest weapon in the battle against chronic fatigue syndrome (ME/CFS) has to be the almost dizzying emergence of new technologies being developed. ME/CFS may not have much money, but somehow it’s attracted several pioneers in the medical technology field.

Dr. Ian Lipkin specializes in creating new technologies, one of which he will soon bring to bear on ME/CFS

Ian Lipkin (Columbia), Ron Davis (Stanford), Gordon Broderick (Rochester), and Travis Craddock (Nova Southeastern) aren’t just using the latest technologies – they’re actually creating them. Lipkin, the Director of the Center for Infection and Immunity at Columbia University, and a longtime Simmaron Research Foundation collaborator, is internationally known for his ability to create new molecular diagnostic techniques.

Lipkin developed MassTag-PCR, the GreeneChip system, and was the first to use next generation sequencing technology to identify pathogens. The 1,500 or so pathogens Lipkin identified include the West Nile Virus, numerous tick-borne agents, Lujo virus, MERS-CoV, and Tilapia Lake Virus to name a few. He also played a critical role in battling the SARS epidemic in China.

Lipkin, who has worked with Dr. Dan Peterson for many years, has a long collaborative research history with ME/CFS. Since September 2017, Lipkin has been the Director for the Center for Solutions for ME/CFS (CfS for ME/CFS) at Columbia University funded by the NIH.

Mystery Disease Strikes Children

Lipkin made news recently with his discovery of the apparent cause of a puzzling and devastating disease mostly affecting children called acute flaccid myelitis (AFM). The way the disease develops bears some interesting similarities with ME/CFS.

Several striking bits of evidence suggest a pathogen might be involved. The bug is not new – it first showed up in 1962 – and usually causes nothing more than a respiratory infection  – but in rare cases (600 cases in the U.S. since 2014) it can be devastating.

A spike in AFM incidence in the U.S. in 2014 suggested a virus might have become more prominent.  The fact that most infections appear during late summer and fall as pathogens start to sweep the U.S., plus a CDC report which indicated that the disease almost always followed a respiratory infection, turned a big spotlight on pathogens.

Lastly, symptom onset was abrupt and the disease produced polio-like symptoms such as difficulty moving the eyes, drooping eyelids, facial droop, facial weakness, difficulty swallowing, slurred speech, sudden arm or leg weakness (paralysis). The difficulty breathing that caused some children to be placed on ventilators brought back memories of the iron lung which kept people with polio alive in the early 20th century.

With that the hunt was on for an enterovirus – the cause of polio and a sometimes conjectured cause of ME/CFS. Although attempts to snag the intruder in the cerebral spinal fluid proved fruitless, it wasn’t for lack of trying. The CDC created a task force (which included Avindra Nath, the lead investigator of the NIH intramural study on ME/CFS) and embarked on a cerebral spinal fluid (CSF) study that included over 500 people.

Lipkin Tries New Tack

Lipkin proposed a low viral load, a hit and run virus, and technical issues might be bollixing up the PCR search in AFM, and turned to a much more powerful new technology developed by his team called VirCapSeq-VERT, as well as the use of peptide arrays that looked for immunological responses to pathogens. (VirCapSeq-VERT with its ability to detect novel and mutated viruses is like PCR on steroids.)

The peptide arrays proved the trick. Lipkin found antibodies to EV peptides present in almost 80% of the study participants’ CSF, and zeroed in on a specific enterovirus called EV-D68.  Since then a separate study has confirmed his finding. Now some researchers are calling acute flaccid myelitis “the new polio“.

Lipkin on Acute Flaccid Myelitis


Lipkin will begin testing people with ME/CFS shortly

Lipkin will soon begin testing ME/CFS samples

The question now is whether Lipkin can do the same thing for ME/CFS. A VirScan analysis funded by Solve ME failed to produce results; however, that method may not have had the specificity needed to find the footprints of an infectious agent. Lipkin and his colleague Dr. Nischay Mishra are using the same Serochip method they used to solve AFM, to begin an intensive search for an immunological response to a pathogen (viruses, bacteria, endogenous retroviruses, fungi) in ME/CFS.

The Serochip will scan through up to 6 million peptides (small amino acid chains) in an attempt to uncover a hidden pathogen that has been, or still is, tweaking ME/CFS patients’ immune systems. The work could also uncover an autoimmune reaction.

ME/CFS with its multiple subsets is likely far more complex than AFM, but if Lipkin can find a distinct immune signature or more likely distinct immune signatures in ME/CFS, he might be able to break another mysterious, pathogen triggered disease wide open.

Lipkin and his team will begin testing the blood or spinal fluid of ME/CFS patients in early 2020.

Click on the stories below for a look back at Simmaron’s collaborative work with Dr. Lipkin.

Ian Lipkin & Simmaron to Collaborate in New NIH ME/CFS Research Center

Peterson’s Atypical Subset Opens New View of ME/CFS in Columbia/Simmaron Publication

Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome

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  • Issie

    January 1, 2020 at 5:48 pm - Reply

    Would be interesting to know if this is the type “virus” that my sister and I and a male friend had, back in the 60s, after a vaccine that caused our symptoms to be very similar in to both polio and mono and took us out of school for a year and unable to walk or sit up. Wonder if the virus would still show up? All of us DX with ME/CFS, FMS and many other things. I can’t do a spinal check (EDS), but would be willing to give blood to be checked and I’m certain my sister would too.


  • Jean

    January 1, 2020 at 6:15 pm - Reply

    May I suggest looking at the ME/CFS subgroups identified by Dr Younger at UAB? If it turns out that we do have a variety of different types, then test results that might stand out for a specific subtype might get lost in the mix of everyone all together.

    • Cort Johnson

      January 1, 2020 at 6:31 pm - Reply

      The subgroups are the big question. They must be there and hopefully they will pop out in Lipkin’s study. As Lipkin has several times remarked on the subsets (and has uncovered several) I’m sure they will be looking for them.

  • Agnes

    January 1, 2020 at 6:19 pm - Reply

    I will gladly give blood or csf. In the early stages of
    my illness, my naturopath had me tested for Lyme
    At my request as most drs here in Ontario refuse to test for Lyme. It came back negative but showed high
    for something else unidentified. Wonder if that is the cause and/or contributor to my illness. Hope
    to be of service!

  • Guido den Broeder

    January 1, 2020 at 6:50 pm - Reply

    May I suggest looking at ME instead? Hint: this is not a subgroup of ‘ME/CFS’. Until 1954 ME had another name: polio.

  • konijn

    January 1, 2020 at 7:38 pm - Reply

    Has Ian Lipkin really enough money for this? for his own center of excellence he does not.

  • Cort Johnson

    January 1, 2020 at 7:38 pm - Reply

    It’s an interesting connection. If an ME-polio-like group is present, hopefully it will show up in this study.

  • Tracey Anne

    January 1, 2020 at 9:24 pm - Reply

    I had an older brother, who apparently either had a reaction to the vaccinations he was given at 8 months or had some sort of virus or both, which left him brain damaged. That would have been around February 1960, in Cape Town, South Africa. I wonder if there’s a link with the kind of virus Dr Ian Lipkin is looking for?

  • Lilpink

    January 2, 2020 at 11:27 am - Reply

    It might be a very good idea to use a simple algorithm to tag patients who conform to existing but varying criteria. My guess, given the interesting results coming from Hanson, VanElzakker and the Griffiths team, who all use ICC, is that some signatures will vary considerably depending on the way in which they have been diagnosed in the first place.

  • Cort Johnson

    January 2, 2020 at 5:27 pm - Reply

    Hi Konjin, I know what you mean. I didn’t expect this to pop up either. Apparently he has enough for this study! .It just goes to show that even with less than optimal funds really interested and cutting-edge research can be done. I imagine he would be able to improve the study if he had the funding – perhaps enlarge it or whatever – but he does have the funding to get it going and see if it produces anything. If it does then hopefully he’s off to the races with greatly increased funding.

    The hope of the research centers was that they would spark something – you never ever know with research but this seems definitely sparkable! 🙂

  • Carolyn

    January 2, 2020 at 7:20 pm - Reply

    If you are looking for patients with ME, I’d figure out a way to get to you. I’m near Toronto…but anything to help me fight this…I’m willing to suffer through. No one should have to live life like this. I want to be FREE….or at least understood and not ignored 🙂 I pray for your success and wish you the best. I’m 46 F, 7+ years – Came down with it May 24th, 2012

  • Chfrat

    January 3, 2020 at 6:06 am - Reply

    Are the subsets identified by Dr. Younger available to review?

    • Cort Johnson

      January 3, 2020 at 6:33 pm - Reply

      I don’t remember how Younger identified his subsets but I doubt Lipkin has the ability in his study to use them – without adding new funding and tests to the study. However, if those subsets are present they should pop out.

  • Aidan

    January 7, 2020 at 8:48 pm - Reply

    1. Stiff Person Syndrome blood tests 2. GSD types panels 3. Eagles Syndrome including the Vascualr type & TOS 4. Biotin Thiamine Basal Ganglia Genetic deficiencies & 5. do the EDS

    Panels for missed Tenascin X & VEDS 4 & ruling out 6. Marfan’s which goes so undiagnosed. We need serious Genetic panels done, they will show up if they are there & they are not done

    & results can be seen in most from 2 to 8 weeks time. Why is it Dr. Stratton can find C. Pneumonaie & they cannot it is a serious airborne infection & is noe Drug resistant.

  • Art

    January 18, 2020 at 10:20 pm - Reply

    As a ten year old I was afflicted with atypical polio with slurred speech and leg weakness in 1956.
    Recovered eventually.
    In 1987 came down with CFS/ME. Always wondered about connection.

  • Mike Lapenna

    February 8, 2020 at 6:54 pm - Reply

    Carolyn and Agnes, if you are willing to participate in ME studies and research, there’s several you might be interested in at my website: Let me know if you have any questions.

  • Mike Lapenna

    February 8, 2020 at 6:54 pm - Reply

    Carolyn and Agnes and others, if you are willing to participate in ME studies and research, there’s several you might be interested in at my website: Let me know if you have any questions.

  • Anton

    March 1, 2020 at 9:47 pm - Reply

    Interesting Article. Normal blood work/tests have failed cfs patients. Any decent old school hematologists will find reactive/atypical lymphocytes on a bloodsmear of cfs patients which is a result of antigen stimulation.
    Some pathogen-related causes include:
    Epstein–Barr virus
    Toxoplasma gondi
    Treponema pallidum (syphilis)
    Streptococcus agalactiae (group B streptococci)
    Hepatitis C