Informal Family Survey

The blog’s readership has been growing recently, currently averaging well over 1000 pageviews/day. Not a big number in internet terms, but still an awful lot of people. Knowledgeable people, because it isn’t exactly easy reading.

Dr. Snyderman and I have been discussing how we might use the blog as an investigative tool. Polls with self-selection are not statistically valid but may provide clues about what to look at in a more formal study. In this case, we are hoping to demonstrate patterns of transmission. As an initial exploration, we’d like to get a sense of how many ME/CFS patients reading have family members, by marriage and blood, with ME/CFS or other neuroimmune diseases. Include ASD, GWI, MCS, atypical MS, fibromyalgia, chronic Lyme Disease, other. Include neurodegenerative diseases, MS, ATLS, Alzheimer’s, Parkinson’s Disease, other. Note inflammatory bowel diseases, IBS, Crohn’s and UC. Note any prostate cancer, leukemia, lymphoma, other cancers. Also please include neuropsychiatric diseases, PTSD, OCD, bipolar disorder, other. Do include subclinical disease. Please err on the side of inclusion. If you are familiar with the Canadian Criteria for CFS, note if you meet criteria or not.

We are asking ALL readers with ME/CFS to send an email, even if you have no other affected family members, in an attempt to have a denominator. If your spouse/partner is ill, report as a family member. Please present the information with yourself first and family members listed below, in the following format.

For yourself:
Date of birth
Place of birth
Date of onset of illness
Location where became ill
Trigger if known
Number of children, note if adopted
Are Canadian criteria met?

For your family members:
Relationship to you
Date of birth
Place of birth
Date of onset of illness
Location where became ill 
If ME/CFS diagnosis, trigger if known
If ME/CFS diagnosis, are Canadian criteria met?

For ALL respondents, including those with no affected family members, please answer the following questions:

Do you have a spouse/partner? How long together?
Is your spouse/partner (or an ex-spouse/partner) ill? If yes, do you think you became ill independently (both ill prior to meeting)? Please provide details.

How many unaffected children do you have?
Were unaffected children breastfed or not?
How many unaffected siblings do you have?
Do you think that a vaccination was implicated in yours or a family member’s illness? If yes, provide any details remembered.
Have you or any family members been tested for XMRV? If so, please report results.

All information will be kept confidential and used for statistical purposes only. The surveys will only be shared with involved physicians and biostatisticians. Results will be shared publicly.

Please share the link to this page, but it would be helpful if the survey were NOT posted elsewhere in full (except for translations, thank you!), as we’d like to track responses as a percentage of pageviews.

Send with subject line: Family Survey
If you have no affected family members, please put NEG in the subject line.
Cc both of us:

Thank you,
Michael Snyderman MD and Jamie Deckoff-Jones MD

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75 thoughts on “Informal Family Survey

  1. >I agree with Agatha's comments about CFS being a bit of an umbrella term. I am XMRV+ and live in the UK where the term ME is still used. I prefer this term, as I think the term CFS is too wishy washy and non-specific and could refer to any number of illnesses where a fatigue state exists. The term CFS isn't helpful to us and it doesn't help the public to understand the illness, as they think that fatigue is the be all and end all of the illness, which of course it isn't.
    We shouldn't waste our energy debating the whole CFS/ME name thing any longer – it's a joke that we still haven't even been given an accurate name for our illness.
    Most readers of this blog are pretty well-informed and we all talking about the same illness here – whatever our personal preferences are regarding the naming of it.
    I am really glad to have been able to participate in the family survey, it is a great idea and I bet it throws up some quite startling findings. Good luck, guys!!

  2. >Am so curious as to the patterns that these collected profiles will show. Although 4 people in our family became ill – we had different symptoms – we saw different doctors, different specialists…none interested in the welfare of us all, or any connection between us.
    We were just grateful to recieve what help we could – and that was pitiful.
    Keep us posted with little previews, OK?

  3. > might be useful for future surveys. It would collate results and do analysis, hopefully all for free.

  4. >If y'all look on page 218 of Osler's Web, y'can see quotes from a couple of the authors of the 1988 Holmes CFS "definition" stating that since the definition was not the result of experimental work, but rather, a MEANS to apprise the physician population that an effort to standardize evaluation of these patients was underway… that the dang CFS definition didn't HAVE to be perfect or totally defining of the disease.
    It was more of a "heads up".
    To know what was being described… you had to look at the patients, and the particular ILLNESS that was under scrutiny when "CFS" got thrown together.
    (Yes, there was one. It was called "Raggedy Ann Disease)

    But anyway, if anyone ever decides to look back at that incident, I just happen to have a "common denominator" that's kind of interesting… to me, anyway.

    But if it angers you, then by all means… DON'T!

  5. >Hmmm. I see that nobody bothered to point out that there ARE special tests to diagnose ME.

    If one does not use them, then "ME" is nothing more than a fancy label, stripped bare of its real value as a diagnostic instrument.

  6. >""The cardinal features, in a patient who has previously been physically and mentally fit, with a good work record are:

    (1)Generalised or localised muscle fatigue after minimal exertion with prolonged recovery time.

    (2)Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.

    (3)Variable involvement of cardiac and other bodily systems."

    The tests that speaks to these abnormalities in ME were nerve-conduction and electromyography.

    "Neurotransmitter ennervation" is what they are measuring.

  7. >ErikMoldWarrior said..
    "The tests that speaks to these abnormalities in ME were nerve-conduction and electromyography."

    Are these tests routinely done for ME in the US?

    I've never seen suggestion that these tests should be run for ME in Australia?

    Do any Aussies know of the tests being used here?
    Here are descriptions of what the tests involve:

    Nerve conduction test


    I had a nerve conduction test on forearms about 18 months ago after a shoulder injury that left me with persistent pins and needles and numbness in tip of one finger.

    A longstanding feature that I have is difficulty with handwriting. Within the last few years my ability to write has deteriorated to the point where I find it very difficult to write more than a line or two; I can write, but it's messy and slow going. It's not like in Parkinson's D where writing starts normal size, then gets smaller and smaller.
    When I was younger it had clear association with the wax and wane of my energy levels (the wax and wane of energy was clearly related to phase of menstrual cycle); when energy was better so was writing, when energy was crap, so was writing. Now my writing is permanently crap, but I must be well into perimenopause with lower levels of hormones. Energy isn't waxing and waning as much now either.

    I hadn't thought of difficulty with writing being a feature of ME/CFS until I read this ProHealth thread and realised others have this issue too:
    The people who posted comments on the PH thread seem to have the same issue of waxing and waning difficulty with writing.

    My nerve conduction result was completely normal; at one point the neurologist seemed stunned as he watched the result coming through (at that point he explained that the results can be influenced a bit by amount of fat coverage, so the minimal fat on my arms was giving very pure results, which they don't always see).
    He ruled out any sign of PD, so why I have cruddy writing remains a mystery.

    Eventually the numb finger tip disappeared, took about 4 months and I had some chiropractic and acupuncture for it, but I'm not sure whether either contributed because numbness went after I stopped the treatment.

    Whatever fixed the finger didn't cure the pins and needles (unrelated to aforementioned shoulder injury) I get in one or both hands in about the last hour before I get out of bed.

  8. >I sent the email like requested but started thinking a little bit more… between my parents, total of 5 sibling sisters, and 2 grandkids: c-ptsd, breast cancer, lymphomia, lucemia, vasculitus, hepititus c, allergies, sensory sentsitivity, kidney infections, open heart surgery, mitral valve repair, Vtac, tacycardia,cfs, fibromyaglia, tonsils removed, diabetic, hypoglycmia, low blood presure, coumadin resistent, alcoholism, that's what come to mind for now….

  9. >I have copied my response to the blog at CFS central here:

    Biomarkers are critical to allow for proper cohorts. A true Me/CFS cohort must be defined by its biomarkers and not by clinical (mainly self reported) criteria. we are actually closer to a set of biomarkers than most think. Once we can use them the process of nailing down the pathogen(s) involved will be much clearer and faster. And it will come down to removing the pathogen(s) not pharmacological fiddling with the nervous system.

    There is no consensus on biomarkers generally because the subjects/patients that make up the studies are so mixed and attempts to identify biomarkers are confounded by this mix. The case definition ie. the diagnostics even as espoused by Leonard Jason will not be reliable enough to separate the groups to allow for effective biochemical markers. And its not sufficient to just change the name to ME because that is just a name (although a better one).

    For example we know that RNase-L fragmentation is a marker for ME (as well as other illnesses). However when some studies examine this among their ME/CFS subjects it is not consistent. The reason it is not consistent is that the cohort is not consistent. Similarly when looking at a cytokine profile such as suggested by Nancy Klimas, the fit is not reliable.

    The process that will move ahead better is to take the known set of markers (they do not have to be exclusive to ME) as a cluster and remove all other patients who do not fit that cluster because "ME/CFS symptoms" is not a disease, it is a set of symptoms. (The same applies to Fibromyalgia – it is not a disease it is a set of symptoms).

    Just looking at the immunological literature you see the biomarkers. Don't look at the neurological literature, it is very confusing and not exclusive enough – yet!

    The main markers are:
    RNase-L fragmentation – range maybe a factor
    Cytokine profile
    NKcell(bright) levels
    NKcell(dim) levels
    NKcell(dim) function level
    gene profile eg. the 44 gene classifier as announced by Jonathan Kerr et al.
    Nuclear factor kappa b function

    There are others which need a little clarifying.

    First select the group using Jason's modified canadian criteria.
    Then test for an agreed set of immune markers (as above).
    Exclude those that do not have the markers.

    Hence work is then done using a more biochemically homogeneous group

    Take this group and work with it. Investigating:
    XMRV,HHV6, HHV7, CMV, enteroviruses, etc. Gut bacterial responses to stress, pesticide residue levels, etc. This is to hone down on the primary causes. Verify the 67% or more having XMRV.

    If this group splits in different pathogen groups then it is telling us we have numerous causes. Forget the psychological and social factors at this stage – they are a waste of time and add to confusion. Funding should be put ONLY into finding/verifying the markers. There is no point in aiming for clinical treatments until we have sorted the biomarkers and THE CAUSE(S).

  10. >To give an idea on the markers,
    Here is the results of NKcell(dim) activity from a patient/research subject with ME/CFS (Canadian criteria)recently tested:

    NK cell activity=3%.
    The healthy subject reference range=13.8%-34.8%.
    Although low NK cell activity is a biomarker for CFS the reason for symptoms is not solely attributed to the low results. That is this marker must not be used on its own. Although an improvement in health often shows an increase in NK cell activity.

  11. >And this from WPI nearly 1 year ago:
    with a drug that has been available for several years but because of cohort problems was never properly investigated. I don't suggest Ampligen is a clinical success but its use clarifies some of the parameters of the biochemical research. This is where we need to be in our research.

    Following is the abstract of a research paper by a team of University of Nevada/Whittemore Peterson Institute researchers. The paper was presented May 9 to immunologists gathered in Baltimore at Immunology 2010™ by UN/WPI lead author Isabel Barao-Silvestre.

    Characterization of the therapeutic increases in Natural Killer (NK) activity of xenotropic murine leukemia virus-related virus (XMRV)-positive chronic fatigue syndrome (CFS) patients effected by poly (I): poly (C12U) (Ampligen) – Source: May 9 Presentation, Immunology 2010™

    Chronic Fatigue Syndrome (CFS) is a debilitating disease of unknown etiology that affects ~17 million people worldwide. Patients suffer persistent viral infections and may develop hematopoietic malignancies. The patients have reduced Natural Killer (NK) cell activities which could contribute to the diseases, and, if restored, potentially reduce symptoms.

    We characterized the in vitro effects on NK cells of the interferon inducer poly (I): poly (C12U) (Ampligen) which in some CFS patients abates disease symptoms.

    The 30 CFS patients were infected with the gammaretrovirus xenotropic murine leukemia virus-related virus (XMRV).

    We cultured their peripheral blood mononuclear cells with the drug for 24 hrs and monitor NK activity to K562 cells by flow cytometry, concurrently measuring degranulation by externalization of CD107a, and expression of Grz B and perforin.

    Treatment markedly increased CD107a externalization in the NK cell population as indicated by 5-fold increases in CD107a-positive cell frequencies and 3-fold increases in their CD107a MFI, with slight positive shifts in intracellular Grz B and perforin.

    In contrast, T cells showed little change in CD107a externalization.

    Our results suggest that degranulation rates may be more affected than the levels of cytotoxic proteins, indicating a novel mechanism by which NK activity was affected by the drug.

    The increase in degranulation per NK cell indicates a mechanism by which Ampligen treatment can improve NK cell function.

  12. >The faint warning signs that NO definition of ANY kind was going to have a perfect correlation with the underlying pathogenic process is laid out in Osler's Web on page 90:
    "Invitation to an Epidemic".

    It is in the story of the lawyer from Zephyr Cove who presened with an unusual cancer.
    He was swept up in the exotic testing that Dr Cheney and Dr Peterson were ordering for their mystery-malady patients, even though he had no marked signs or symptoms.
    Not even what might be called "fatigue".
    Yet he had the concurrent immunological defects and LATER developed the state of debilitating illness.

    The CFS definition was only intended to be the starting point that leads back to the underlying mechanism, which apparently could exist in a precursor state without any overt signs whatsoever.
    (Go grab your copies of Osler's Web, it's right there, plain as day.)

    Instead… incredibly, amazingly, MIND BOGGLINGLY that such a crazy thing could ever happen… although this stuff was known right from the start, the CFS definition
    somehow, "became the disease".

    Wow. What an incredible journey this has been!

  13. >ErikMoldWarrior
    I suspect that the "underlying mechanism, which apparently could exist in a precursor state without any overt signs whatsoever" is correct. The recent evidence showing the relationship between MS, HHV4 and vitamin D deficiency or insufficiency may be true for some ME/CFS and other viruses including HHV4.

    I suspect the "outbreaks" we have seen over the decades are not "outbreaks" of ME/CFS as such but that another infectious outbreak caught some of those people with low vit d, a latent herpes virus and a genetic predisposition and "bingo" the ME/CFS comes to the fore.

  14. >Dr Cheney's theory was that the primary virus had gone through months before, and THEN we got whacked by something that unveiled it.

    "Ticking Time Bomb" almost became a name for the illness.

    But look at this excerpt from Osler's Web on Hillary Johnsons website, about the "demarcation" that convinced Dr Peterson that there was no doubt about the infectious nature of the disease.

    There were other people in the Alder st. office who became ill in a similar way, but their stories weren't included in Hillary's book.

  15. >Thanks for that reference on Osler's web. Interesting reading indeed. Just out of interest, I too became ill with ME/CFS following a blood transfusion in 1986. My symptoms built up gradually though and it was impossible to pin the illness on the transfused blood. Incidentally New Zealand was the second country to ban blood from people diagnosed ME/CFS. I have tried to convince our blood supply to include fibromyalgia in that because a significant percentage of people diagnosed FMS actually have ME/CFS. FMS is the more popular and acceptable diagnosis and people with wide spread pain (FMS) are referred to a rheumatologist who rarely diagnose ME/CFS. I have also expressed concern about organ donation as this will also spread such infection without any immediate symptoms.

  16. >The meaning attached to FM went through the same crazy extensions, redefinitions and re-interpretations that ME, CFS, Lyme disease did.

    When you look at the history of how each of these names came into existence, they were coined to describe a specific "entity" and framework of parameters, and in each case, those parameters were eroded over time, and changed to something else.
    The Lyme disease of today bears only a superficial resemblance to the rash, fatigue, and arthritic symptoms of Polly Murrays time.
    It is now said that Lyme disease is "the great imitator" and can be just about anything, but if that is so, then why DIDN'T Lyme imitate everything when it emerged in Lyme, Connecticut?

    The original set of parameters might still be found within the inexorably increasing meanings attached to these terms, but are considered "subsets" at best, and in the case of CFS, considered by many to not even the same illness which generated the name.

    The original meaning for FM was to describe a much vaguer generalized type of pain.
    In 1990 the American Collegue of Rheumatology inserted the famous "tender points"
    But where did that leave the Original FMers who were aching in their muscles and joints, but didn't really have the same kind of tender points that were now being described? Let alone having the TRIGGER points which are far more interesting?
    I say this because during the Incline epidemic, the publicity attracted people from afar.
    It was from those people that I first heard descriptions of trigger points. Nobody I knew in Tahoe had them. Their illness had similarities to the Raggedy Ann Disease, and yet, was missing many complaints that we had, and possessed other manifestations that we did not.
    To separate their description from ours, the "Trigger Point" people seized upon the little used term "Fibromyalgia".
    I remember thinking at the time that since this term was already "taken" for something a bit different, that there was bound to be trouble.
    They didn't care. They liked the name, so they grabbed it, unconcerned that there was an "old FM" that didn't quite match the new Trigger Point illness.
    The term Fibromyalgia was immediately impressive to doctors, which engendered more respect than CFS, so they were delighted to have such a superior name.

    And now I hear that the College of Rheumatology has recently acted to REMOVE the tender point description, which, in a way, is erasing the Trigger-Point-People who jumped on the FM term as a means to separate this symptom from CFS.

    The medical profession seems intent on blurring the lines between ever 'unexplained illness' until virtually ALL can be thrown into one convenient wastebasket.
    Since "CFS" is the most "wastebaskety" of names, that's where everything gets dumped.

    And the irony here, is that since the history of CFS is so well documented, it is the term in which the way the medical profession demolishes and disintegrates each discrete "framework" is so easily seen for what it is.
    A way to make troublesome illnesses disappear.

  17. >Little mouse from Belgium:

    I have had chronic fatigue for many years and was tested through Dr. De Meirleir in Redlabs. First my blood was tested for XMRV (came back negative), then a gastroscopy (biopsy in my stomach) came out positive.
    I asked the lab why there are so many negative studies, why other labs cannot replicate the Science study worldwide, and they said they have bought the licence and know the exact steps to do the tests.

  18. >My diagnoses is GWI/CFS.
    My personal opinion is you can over tax the immune system via physically, mentally,the environment we live in and over vaccination(s).
    Given my circumstances the over vaccination(s)is the straw that broke the camels back.

  19. >Thank you for doing this work Dr Deckoff-Jones, I'd be very interested in what you make of my family history….will send it over to you. Thanks a lot. This is such important work x

  20. >WOW! For the 1st time since 1986 me (and now my adult children have a voice!!!) I'll send it off tonight!
    Thank you and God bless you!!

  21. >Hello! I've only recently found your blog, and find this survey very interesting as there's a history of prostate cancer (among other things) in my mother's family. I've found out as much as I can from her and now I've got rather a lot of information to send you – can I save it as a PDF and send it as an attachment, or will your email think it's spam if I do that?

    There are quite a lot of gaps in Mum's knowledge, but I presume partial information is at least partially helpful?

  22. >Hi Juliet,
    You can send it in any form that works for you. Please put "Family Survey" in the subject line.
    Thank you for participating,

  23. >What do you think about the non absorption of
    Sodium Phophate and then of course the good old B12 injections which I was told would work 27 years ago….

  24. >I have posted this survey on my groups page: Nondeployed veterans with Gulf War related Illnesses.

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