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. >All done, thanks for the heads up, & I hope it's helpful. Quick and easy, glad I could do something. ^_~ Have a great day!

  2. >Jamie,
    I and another ME/CFS patient I know have Alzheimer's in our families, and I'm sure there are others. Would this also be one to include?


  3. >Please err on the side of inclusion and feel free to explain anything you think pertinent.


  4. >Fantastic Idea!

    Would you want to include RA. More just an immune problem, so i wanted to make sure before starting the long list of family member with this disease.

  5. >Will try to do this … I wish it were in a questionare format where we could just check boxes … :-)

  6. >Hi Jill,

    I believe ME is the British name for (American) CFS, as most "Canadian Criteria" CFSers would define it. It's true that CFS has been used more broadly here and elsewhere, and thereby tainted as a name for the illness, but I can tell you that, having read plenty about ME, I have what you have, only here we Americans have (for the time being) bowed to the CDC in calling it CFS. So, I guess you would say that all people with ME have (American-defined) CFS, but certainly not all the people that the CDC or Simon Wesseley say have CFS actually have ME. I now try to remember to use the term ME/CFS for my illness, a term which is gaining popularity here in the U.S. I think British people with ME sometimes think that, because they have adopted a better name and a more distinct definition, they have a different illness from those in America with "CFS," but that is only true in some cases. When you limit CFS cases to those that fit the Canadian criteria, it is essentially the same disease as ME, I believe.

    All the best,


  7. >Yes on RA. Include autoimmune diseases, neurodegenerative diseases, neuropsychiatric disorders and cancer. Err on the side on inclusion.

    Thank you all,

  8. >What if… your official diagnosis is Fibromyalgia, but you meet the Canadian criteria for CFS?

  9. >Jamie- I am so glad you asked. I have believed this to be of use for some time now. Just wish we could reach everyone who needs to be included. At least this gives us a chance to speak to the cause. I was working at a small hospital when I became Ill. 20 to 30 of my coworkers also became ill but to my knowledge no one has followed up that we might all have the same thing or that there was a reason so many became ill and a few died. I will be completing the info for me and direct family shortly. Do not know enough about my ex coworkers. M Bloomer

  10. >Hi Agatha, If we were to do all this in theory, but it is making many leaps of faith and involves some cases or most cases without any real backing or specification.

    In the US there is a great deal of misinformation, often being put out by patient groups. ME is not a name for CFS as ME predated CFS by around 50 years. ME patients want an ME diagnosis, not connected with or linked to CFS, so ME/CFS is not very popular.

    ME is not the same as CFS, even if some symptoms may "match up." CFS is so broad that it can define almost anything including psych illnesses. ME is a neurological illness whereas CFS is a fatigue syndrome.

    The Canadian def is better than Fukuda (CFS), but it is for ME/CFS and includes elements of both. It is perhaps a watered down ME definition but not a real ME definition (Ramsay). And it still has the CFS part. No one with ME should be given a diagnosis of CFS, even as a hybrid or add on.



  11. >Did it.

    Oh! I hadn't thought about Alzheimers. I'll send an addendum with that and a few others I just remembered.

  12. >Jill,

    For the purposes of this survey, we would like anyone who has a diagnosis of ME, CFS or who meets Canadian Criteria to answer.


  13. >Hi Jill,

    Of course, we are talking about both semantics and real differences. There are few (if any) people in the U.S. who have sought or been given a diagnosis of ME. That doesn't mean they don't have ME, as it is defined in the U.K. I am aware that ME predates CFS as a name by many years. But people in the U.S. who have ME are simply not given that diagnosis, although that means nothing whatsoever about their actual health status. There are diseases, and then there are the names by which they are called.

    Pretty much every patient in the U.S. agrees that CFS is a problematic name, and that CFS, as currently defined, includes a too-broad group of patients, some of whom would fit the criteria of ME and some of whom would not. The Canadian consensus was an attempt to narrow the definition in a way that approximated ME (serious neurological illness) without insisting on any particular name for this illness. The name ME/CFS is a compromise name which many people have recommended for the U.S. as a way to help narrow the focus of research and policy to the serious neurological illness that you call ME, while keeping the familiarity of the "CFS" designation, which has been the only widely acknowledged name for this illness (and other "fatiguing" illnesses) for over 20 years in the U.S. This renaming may or may not help to solve the problem of the patient group being too broadly defined.

    Many American patients actually prefer to use the term ME, without the "CFS" add-on, so as to relieve ourselves of the burden of this vague, stigmatizing, waste-basket category. The problem in the U.S. is that no one knows what you are talking about if you just say "ME," and it would take many years to change this.

    I think I understand a lot about the history and the politics of the terms ME and CFS in the U.K., but the history and politics of these terms have been quite different in the U.S. It becomes very difficult to untangle the illnesses themselves from the names given them.

    If you were to ask me, do I have CFS, as defined by the CDC, or ME, as defined by ME groups in the U.K., there is no doubt in my mind that I have ME, as defined in the U.K., including an abrupt onset, extreme and enduring reactions to physical exertion, cognitive and visual disturbances, muscle twitching and pain, illness to the point of being bed-bound for years, etc. There is no one (as far as I know) in the U.S., or at least where I live, who will test for and give a diagnosis of ME. So I am put into the waste-basket category of CFS. Does this mean I don't have ME, as you define it? I don't think so.

    (continued in next posted comment)

  14. >(continued from above)

    I think it's great that people with ME in Great Britain have stood up to the Simon Wesseley types who label their disease "CFS" and then try to explain it away. I love that patients there have decided to claim and stick with the original, historical name for the illness. We should have done this long ago in the U.S., when the CDC adopted "CFS" and then broadened it to include everyone with fatigue. Now, of course, even our patient activist groups probably include people who don't really have ME, which then complicates our activism.

    But please don't reject your fellow ME sufferers in the U.S. simply because we have been given a different (and problematic) name for our illness. And please don't perpetuate the idea that people who say they have "CFS" don't have what you have, because if they live in the U.S., they may very well have exactly what you have, without having a good name for it. It feels divisive and dismissive if you tell me I don't have ME simply because there is no one here to give me that diagnosis.

    It is also true that the term "CFS" has been even more stigmatized in the U.K. than it is here, possibly because here in the U.S., folks with very serious ME still use the name CFS, which has given the name a certain gravitas among doctors and scientists who look closely at this illness. So people with ME in the US aren't as determined to distance themselves from the term. We aren't nearly as dominated by the NHS model of CFS, so the name, while stigmatizing, isn't quite the same here.

    Seriously, this is a complicated linguistic issue, but we shouldn't allow it to divide patients from each other. Yes, even on this forum there may be people who don't actually have ME, but I think can promise you that most of us here do have ME, exactly as you would define it, but if we live in the U.S., we have simply never been given that diagnosis.

    Best wishes to you,


  15. >Is all information we send to you confidential, even from other family members?

  16. >Great initiative, Ive been talking about the influence of ilnesses of other familymembers for quite some time now. Great to have someone who is equally interested in the matter! Will send the email right now!

  17. >Why date of birth?…I suggest just year of birth. I would not feel comfortable handing over my D.O.B. sorry.

    great idea thank you.x

  18. >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.

    A few people have been concerned about sharing their date of birth. Month and year is fine.

    We are interested in respondents from anywhere in the world.

    The responses are already very, very interesting. Thank you to everyone participating.

    Yours, truly,

  19. >The problem with this sort of analysis is that the people who are most likely to respond are those who have family members who are also sick. Personally I'm the only one in my family so it's really not something I think much about and wouldn't participate. So I don't think the results will give you any sort of real idea of % of patients who have family numbers infected. It will just be a reflection of the NUMBER, not PERCENTAGE.

  20. >Would you like this request to be circulated among e-mail groups, web forums, etc? Or do you prefer just regular blog readers to participate?

    p.s. To the person above: I disagree- I am the only one in my family sick, and the extra isolation from that makes me more likely to seek out web forums, answer questionnaires and interact with other patients.

  21. >Please send people here rather than post in full elsewhere. We are still revising slightly based on the initial responses (which are fascinating).

    Thank you,

  22. >This is a wonderful idea!!! I've already e-mailed my information.

    I heard Dr. Mikovitz speak at last fall's NJ CFS Conference. When she spoke about the XMRV family studies, I was floored. When she showed those family trees with all the XMRV positives on them, tears came to my eyes. My sons have both had CFS since 2004 (and me since 2002), and I would do anything to be able to make them well, as I know you understand.

    Thank you for following up on this critical area of study.


  23. >Jamie, this is a great idea and likely to provide really interesting patterns once all the info will be collated. I did my own research in terms of family illnesses last year and it was really helpful on a personal level for my own understanding of this illness.
    I look forward to your published findings.
    Best wishes.

  24. >I think these types of informal surveys are very important to gather info to reflect on and formulate hypotheses. This leads to the breakthrough thinking and ideas that move medicine forward, imo. We need more reflective thinking in this field.

    Here's an extremely interesting article in Wired on Sergey Brin's project to derive statistically powerful conclusions from large sets of 'noisy' low quality medical data as applied to Parkinson's:

  25. >Dear Jamy,
    I am from Holland.
    For about 6 Years ago I heard from a woman with fibromyalgie that her husband was ill: Leukemie.
    Recently in "De Libelle" a women with CFS a daughter with Leukemie.
    Forum of CFS another mother CFS, her dauchter also Leukemie.
    Forum of CFS a daughter Who lost her Father on Leukemie.
    It is something to worry.
    Maybe you can find some Docters in Hospitals
    that ask the Leukemie patients about her family
    That can give you information in another way,
    Because we as CFS patientens have mostly no specialised docters.
    I wish you succes. Sorry for my worse English. I hope you understand. Mary

  26. >This comment is in three parts.

    That's an interesting article in Wired (about Sergey Brin).

    I think this comment from micron26 (on the wired article webpage) adds useful info:
    "This is a lovely infomercial for 23andMe–and they need the help, as their antiquated testing scheme (which in this context means it's 4-5 years old) and early-2000s model of overinterpreting SNP data are rapidly becoming obsolete. The fact that 'whole genome' analysis is haphazardly mentioned in this article is an indictment of its superficiality. 23andMe and Google aren't pushing the envelope in anything here. They can only aggregate and search for patterns in data produced by those who understand biology. It isn't as simple as 'Gattaca' yet. There is no complete genome sequence–there are lots of holes, and the importance of types of variation such as copy number polymorphisms and epigenetic alleles is far from being understood.

    As inadvertantly pointed out here, what 23andMe's and Brin's let's-not-worry-about-noisy-data Googlesque methods approaches don't (yet) offer is anything other than the ability to do weak (if quick) confirmatory analyses. The capacity to interpret data is still far behind the ability to acquire those data.

    If Sergey Brin wants to spend $50 million productively, he should emulate what Jim Simons has done for autism."

    The example of 23andMe quickly ascertaining whether PD patients are more likely to carry a mutation associated with Gaucher disease was “quick confirmatory analysis” rather than interpretation of data. There are a few diseases where there is clear association with a single (or few) mutation, e.g Huntington’s, Gaucher, but epigenetic effects, some of which can be inherited, switch genes on and off, so the mere presence of a gene isn’t enough information.

    Continued in next comment ….

  27. >I recently read about epigenetic effects in an article by Pat Monaghan and Tim Birkhead in 27 February 2010 New Scientist. (In my Australian hard copy the article is titled ‘Who’s the daddy?’, but online its called ‘Dirty tricks of the egg and sperm race’ and a subscription to NS is required to read it; the article is pp 36-39.)

    Here’s the relevant excerpt:

    “…. Recent research shows that contrary to what was previously supposed sperm also contribute more than just genes to the egg. In many mammals it is not just the DNA-containing sperm head that penetrates the egg – the whole thing, tail and all, goes in, transferring thousands of messenger RNAs and proteins. These might be involved in directing embryo development, perhaps even counteracting some instructions from the egg cytoplasm. Some of these male RNAs are of the type that controls gene expression, so their effects on the embryo could be very important, since gene activity must be finely orchestrated in the development of an embryo. As yet their role is unclear.

    Nonetheless, the latest line of research suggests the egg still has the upper hand. This comes from burgeoning interest in so-called “epigenetic effects” – changes in the way genes are expressed without the need to alter the DNA sequence itself.

    Inside a cell, genetic material takes the form of a complex package of DNA and histone proteins called chromatin. It is modification of this structure – commonly by adding a methyl group in a process known as methylation – that leads to epigenetic effects. Epigenetic effects can be induced by signals from within the cell or from other cells. Exposure to nutritional, chemical or physical environmental factors such as food shortage or temperature changes can result in lifelong changes for the organism. Sometimes epigenetic effects are even passed on to the next generation, in which case the process is known as genomic imprinting. It is this that provides another arena for sexual conflict – if one parent selectively switches off or “silences” genes coming from the other. Here females seem to win out.

    With genomic imprinting, which gene is expressed depends on which parent it came from. Of course, this contravenes one of the basic tenets of Mendelian genetics – that alleles from the mother and father are functionally equivalent. Nevertheless, genomic imprinting has so far been identified in a small number of organisms – mostly mammals and flowering plants, with possibly a few fishes. While only a few genes have been implicated they appear to be significant. The imprinted genes include several with a role in embryo growth and development, most of which are also expressed in the brain, meaning that key traits like body size, cognitive ability and personality might be moulded by epigenetic inheritance.

    One intriguing observation is that genomic imprinting appears to be associated with species in which the mother nurtures the embryo inside her body, so contributing far more to survival than does the father. ……..
    Pat Monaghan is a professor in the department of ecology and evolutionary biology at the University of Glasgow, UK. Tim Birkhead is a professor of behaviour and evolution at the University of Sheffield, UK.”

    Continued in next comment ….

  28. >I've done it. I came here from Ravelry – a knitting and crochet site! I hope you get helpful info to set up a more formal study.

  29. >Then there is the interesting comment by micron26 about Jim Simons and autism research. I’d never heard of Jim but a quick read through the Wikipedia article about him reveals he’s throwing serious money into serious science, but ensuring that he oversees how the money is spent:

    From Wikipedia:
    The family's charitable foundation has committed $38 million to find the causes related to autism in recent years, and plans to spend another $100 million in what is becoming the largest private investment in the field of autism research, while Simons personally exerts extraordinary control over where and how his money is spent. Simons has provided DNA from his family for study, and has given assistance in helping solve research problems. When MIT asked for brain research funding, he stipulated that the project focus on autism and include scientists of his choosing.
    On June 11, 2003, the Simons Foundation hosted its first "Panel on Autism Research" in New York City, a day-long event highlighting research into the causes of autism, the accurate genomic mapping of autism, and in the study of the biochemical mechanisms that occur in autistic people. Attendees included David Amaral, Dr. Eric Courchesne, Dr. Nathaniel Heinz, Tom Insel, MD, Catherine Lord, PhD, Dr. Fred Volkmar and Dr. Paul Greengard. The Simons Foundation recently gave $10 million to two researchers at the Yale University Child Study Center to study genetic influences on autism.

    The aforementioned New Scientist magazine has comment that is apposite in a second article.

    In ‘Earth’s nine lives’ (pp 31-35) Johan Rockström (director of the Stockholm Environment Institute in Sweden), and a team of “28 luminaries from environmental and earth-systems science”, in 2009 identified nine ”planetary life-support systems” that humans need to survive on this planet. It is a work in progress and not everyone agrees with their current settings. However, it is a novel way to describe to a lay audience how the planet is coping (or not) with human-induced changes. A quote from this article:
    Boundary: Not yet identified
    Diagnosis: Unknown
    There are approaching 100,000 different human-made chemical compounds in use around the world today, in millions of different products. Additional compounds are created as by-products of manufacturing.
    …. Among those of greatest concern are toxic heavy metals like lead, organic pollutants that accumulate in tissues, and radioactive compounds.
    A handful of these are already controlled. For instance, … DDT, PCBs and dioxins … But the impact of most others remains undiagnosed. And even apparently benign chemicals may combine to produce toxic effects greater than the sum of their individual effects.
    One idea considered by Rockström’s group is that autism and ADHD in children may result from the widespread exposure to low concentrations of cocktails of these chemicals in the environment, creating what they call “a silent pandemic of subtle neuro-developmental disorders in children, possibly on a global scale”.

    The full article is freely accessible at

    As we watch and wonder what will be the outcome from the latest nuclear incident, in Japan, there is comment that the EU’s response has been to secretly raise the “safe level” of radiation in food by up to 20 times!

  30. >Hi there, I want to say first I finished the survey. Took some time, but worht it.

    Next I tried to link the page to facebook and I was blocked because they said the content was spam or blocked content. I know you asked us not to send people here is that why it was blocked or has something happened. I just clicked the facebook icon so that my friends would see you have done a new post and if they usually come here would. Please let me know if anyone else is having this issue. Thanks Lynn

  31. >Hi Agatha,

    CFS is not a valid diagnosis for those with ME. The point of advocacy is to solve problems, not accept status quo. This is the problem that patients have with existing so called advocacy groups. They sell the acceptance of the problem and how it is rather than push for change. ME can and is diagnosed but needs better recognition. No one is diagnosed with ME/CFS.

    The point of advocacy is to educate and do awareness for ME and as you say, untangle all the different names and meanings. There is really no such thing as ME/CFS, and why would we want this?
    This is going backwards if anything and ME/CFS implies they are the same.

    It is not a matter of linguistics, it is about having an accurate diagnosis. While we're bombarded with the unity hype, in this instance it is most important to divide and separate from the fatigued and unwell.



  32. >Jill, I have a thought experiment for you.

    If you could change anything, but you were forced to start with the criteria in CCC (Carruthers et al. 2003), what criteria would you subtract and what criteria would you add?

    Of course you can change the name to ME as it should be.

    You can rewrite the surrounding text to suit your modified criteria in any way you want.

    I am curious to know, specifically, which criteria need to go and which need to be added.


    Also, I am curious about a few points. Specifically:

    1) Do you believe that Lombardi et al. 2009 studied people with ME?
    2) Do you think sudden onset is required in every case? What disease do those who meet your other criteria in spades (full-blown, severely, and very, very seriously) have?
    3) Suppose there is sudden onset of a mild, subclinical, or prodromal disease, progressing gradually over years to a severe, full-blown, serious disease meeting all of your other criteria. Is that sudden or gradual?

    Of course we are just talking about ME. Real ME. Let's not mix in anything else.

    To me, the above would clarify what you are saying by grounding the discussion in specifics. Hope I'm not prying here — just really want to know what you are saying (same as I hoped to do with the ick warriors (I call them that because the ick hypothesis seems to be more specific than the mold hypothesis — mold means many things)).


    P.S. Lately I've been uncertain what topics are on-topic and what ones aren't; hope it's OK to follow up on Agatha and Jill's debate.

  33. >Hey Jill,

    How is ME diagnosed? I've done a little looking up on it, and the impression I'm getting is that it's closer to Multiple Sclerosis (MS) here in the states then? Because they can use an MRI to diagnose it?

    Also this back and forth is a bit disheartening between you two. I don't think Jill is saying the people who are really sick with the lousy US label of CFS are not, and I don't think Aggie is trying to bring ME down to the horrors of being stuck with what is pretty much a hypochondriac label (CFS).

    Let's acknowledge the differences AND stay united, okay guys? ^_^ Hopefully new research will eliminate the awful name of CFS, and provide helpful information for ME research too.

  34. >I like non-HIV AIDS, X related disease or retroviral infection. Personally I don't like ME any better than CFS.


  35. >I feel like once the media does glomp onto it as a real disease they'll call it X. Just because it'll be easy to trump up frightening "must see" evening news segments on people getting X'd out by the new Extreme X virus! XMG! ^_~

    Here's hoping they don't do the fear factor routine when the day does finally come, but I'm not holding my breath.

  36. >Jen,

    The fear factor is a good thing. It worked for HIV. It won't happen to save us, but to save themselves.


  37. >Jen,

    With a CFS diagnosis no one knows what they have. ME is more clearly defined and recognized as neurological. So no uniting with the fatigued and unwell as a diagnosis. If people with a diagnosis of CFS have ME, then they should be diagnosed with ME. Why would they want a dx of CFS?

    It is not what we like but about what we have and what most accurately describes our actual illness.

    I have no problem with a dx of non HIV AIDS, but most with a CFS diagnosis can't get there. I just don't see the shortcut (with the current game that we are happy to keep playing: that we "know" that what we really have is ME that is called CFS but we have XMRV…). And many patients with "CFS" will not have XMRV – so the controversy will continue….

  38. >Easy Jilly-Bean, I hear you. That's why I asked about the dx process for ME. Truth is, I've been doing awful the last couple of months, and while we're looking into MS, (probably doing an MRI), I thought I should know the criteria for ME too. Could you hook me up with a link please? I'm finding a lot of conflicting info in my search…

    Also, I just saw this study today and it looks very interesting Jamie, I thought you might want to see: Antibody Responses against Xenotropic Murine Leukemia Virus-Related Virus Envelope in a Murine Model;jsessionid=159E155669BA4FC9765C02D8E1CDCFD3.ambra01

    And thanks for that point on the "Fear Factor." Good looking on the bright side, I appreciate it very much. ^_^

  39. >For anyone interested, my name is Benni and this is the main CFS blog that I follow.
    I'm starting on the Gupta Amygdala retraining program this week. I'm supposed to give it 6 months.
    Right now, I'm on disability, functioning at 30% on a very good day. I've hovered from 10-35% for the past two years and also have been diagnosed with PTSD and Anxiety disorder (any amount of stress causes a crash or panic attacks). Because I have those issues, I think I have a better chance of succeeding with the Amygdala program than people who do not have those issues.

    I meet the Canadian criteria for CFS, so I'm not just a head case I have fevers several times a week, swollen lymph nodes, IBS, and can only leave the house for urgent matters like obtaining food or doctor appointments. I am not well enough to cook regulalry but I can manage to survive a shower almost every day.

    The program is not psychology; he's not saying "it's all in your head" in the sense that CFS is caused by psychological issues. He believes it is a real, physical problem. He had CFS for three years.

    I had hoped the cure would be in XMRV or the WPI but this is something I can do now, while awaiting results from those.

    I am not overly optimistic about whether this will help but if anyone is interested, let me know and I can post about my progress for the next 6 months.

    (Don't want to be like the mold people pushing it down anyone's throats. Just willing to guinea pig myself publicly so that others who are considering all solutions can explore with me whether this is a viable route to pursue.)

    – Benni

  40. >Hi Benni,
    Of course it's ok with me if you post your progress. I just want to draw attention ahead of time to the fact that a big part of these amygdala retraining programs is telling yourself and others that you are well, no matter what is going on with you. Plenty of people claim for weeks or even months that they are doing better, only to end up bed-bound and much sicker than ever afterwards. You can find their accounts all over the internet. Is it ok with you, whenever you post over the next few weeks, if I remind other readers of this fact?
    A skeptic who nonetheless wishes you well,

  41. >Hi Jen,

    The ME definitions are the original Ramsay type (before CFS was invented – that's the key). Did you catch Lenny Jason's presentation at the NIH State of the Knowledge conference? He did a compare and contrast. Or will forward to you if you want.


  42. >We are four people in the family with ME/CFS. Those same people also have ADHD/dyslexia… Other family memebers without ADHD are also without ME/CFS. The CFS/ADHD ones are also the ones with long fingers and hypermobility. I have often wondered if there is a connection.

  43. >Hi Agatha,

    Thanks your comments. I am in a bit of a quandary already because last month, I began feeling well enough to seek out treatments that might be useful… point being that I was feeling better already a month ago than I had i th previous 6 months. I still had many really rough days in this period but, on the whole, cognitive function has improved.
    I wrote down everything that I had changed from previous routines- from eating pumpkin seeds, consuming no milk and fewer dairy products, to the fact that I had finally come to terms with the fact of my chronic illness; so I added back the milk and cut out the pumpkin seeds, ruled those things out as contributing factors, etc., etc.
    Three weeks ago, I started on 800 mg Cimetidine because it has been proven to work well on herpes related viruses; and I did a 10 day course of acyclovir. Got even better still, to the point that I could do my family's taxes, and go out to the theater.
    I figured I would try to get my MD to continue the antivirals. She won't prescribe valcyte or valtrex (and yes, I do realize these are all kindergarten in comparison to the more powerful meds being discussed on this board) but I fall into the subset of CFS sufferers who responded well to antivirals (Epstein Barr + other herpes viruses).
    My sore throats, cold sores, swollen lymph nodes have been worse than ever but my stamina and cognitive functioning are getting back to a more functional range.
    So, for the purposes of science, I'm not sure whether any info I provide will be useful because 1. I may already be on an upswing 2. It could be the meds 3. I'm no longer stressed out about my illness (i.e., came to terms with it recently, which may be why I've been feeling somewhat better) 4. Maybe without intervention of any kind, I could be one of the lucky ones who ends up spontaneously recovering.

    If I were more interested in Science than my life and my family' well-being, I would use only one method at a time but frankly, I just want to do everything possible to get my life back.

    The Amygdala retraining could just be a load of hooey, but just because we're so against the idea of this physical condition being labeled psychiatric, doesn't mean that doing exercises that are geared toward improving certain functions of the brain that affect our immune systems and contribute to overblown stress responses is a dumb idea.

    I'm willing to do it even though it sounds crazy, because that's what desperate people do. And, if i turns out to be flaky mumbo-jumbo, really I won't care if it makes *me* better.

    – Benni

  44. >Hi Benni!

    I'm glad you are on the upswing. I know what it's like to try lots and lots of things at once, because waiting is unacceptable. And then, of course, it is hard to know what helped and what didn't. I suspect amygdala retraining for ME/CFS is a "load of hooey" as you say, but to the degree it helps you handle stress, that's great. Please just be careful not to overdo and give yourself a setback, which is easy to do even when one isn't experimenting with retraining one's thinking about the illness. I wish you very well!


  45. >Jill and Jen,

    Just to clarify, here are Dr. Ramsay's criteria for a diagnosis of M.E.:

    "A syndrome initiated by a viral infection commonly described as a respiratory/gastro intestinal illness but a gradual or more dramatic onset following neurological, cardiac or endocrine disability is recognised.

    "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.

    (4)An extended relapsing course with a tendency to chronicity.

    (5)Marked variability of symptoms both within and between episodes."

    As you can see, there is no special test for diagnosis, at least according to Dr. Ramsay. So I suppose if one could find a doctor in the U.S. who uses the term "M.E.," one could be diagnosed with M.E. if one fits these criteria (as I know I do). The problem is in finding a doctor who uses this diagnostic label. I'm not quite sure what the point would be, though, since it wouldn't change treatment or anything else, as far as I can tell, and since I don't know of any separate patient group in the U.S. for M.E. Jill, do you know of any American doctors who use the category "M.E.," instead of CFS, CFIDS, or ME/CFS? Do you know if it is even possible to get this diagnosis in the U.S.? And what does a patient gain from having this diagnosis, other than the historically "correct" name for the illness?

    The more I think about it, the more I would like to advocate for a complete name change away from CFS for those who fit the Ramsay criteria (which are virtually identical to the Canadian consensus criteria, by the way, although the Canadian document spells them out more clearly). M.E. would be fine with me, or just about anything else that didn't retain the absurdity of the CFS label and its ugly history. If Dr. Jamie is right and XMRV is the culprit, then it should be easy to push through a new name. (I'm talking about a new name here in the U.S., Jill, where the M.E. name doesn't really exist.) Otherwise, I don't know…

    Best wishes,


  46. >Agatha – I agree and would be fine with this approach, but we need a diagnosis. How do we get there with CFS? CFS is still a mixed bag of anything/everything. And CFS is do not test other than R/O – including retroviruses. And conversely, if you have XMRV you do not have CFS. It's a catch 22. So without a legitimate diagnosis, seems we'll be pondering the same things ad infinitum….

  47. >Is there a deadline for submitting this information? I have a quite large family and it may take some time to get in contact with everyone I need to. Please let me know, thanks!

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