To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

I hit a nerve with my “Nothing” post about what I did (and mostly what I didn’t do) after I was diagnosed. And many of the reactions I heard from others touched on the number one, most important, know-this-if-nothing-else piece of advice I wish every doctor would give to every person diagnosed with ME/CFS.

Item #1: Stay inside your energy envelope.

Here are some of the ways that was said:

Nathalie: “For me if I had known at the beginning what I had and didn’t over do it on good days I might be in a totally different place.”

Kathy D: “After nearly 26 years, I still don’t know what to do except rest most of the time, pace myself very carefully, and take some vitamins.”

Debbie Anderson: “If I had been told by my doctors that by pushing my limits, and burning the candle at both ends, would destroy my vascular and heart systems, I would have listened.”

Breathe Easy: “I feel so strongly that if I had not tried to just push through and act as if the Dx was bogus, I would not be so bad off today.”

Falling ill with ME/CFS is a real down-the-rabbit hole experience. Suddenly, your body, which has always, up to that point, had enough energy to get you through the day, allowing you to do whatever needs doing, just – doesn’t. It’s as if you’ve always made a certain amount of money and all of a sudden you’ve taken a 50% pay cut. In order to maintain a positive balance in your bank account, you must start budgeting differently; your priorities have to change. Since you don’t have enough energy to spend on all the things you used to be able to get done, you have to start making choices.

Now, noting the need for pacing isn’t uncommon advice – but the problem is that it needs to get to the newly diagnosed quickly. People who develop ME/CFS don’t instinctively know that it’s absolutely imperative that they stay within their energy envelope. Why should they? It’s not something they’ve ever needed to do. Plus, it takes time to learn and to shift from that everything-is-normal state to the I-understand-my-limitations state. And oftentimes, it has to be done over and over again as the illness progresses.

Furthermore, our culture does not encourage healthy, well-adapted responses to illness. It rewards pushing through, and so that’s what the newly diagnosed mostly do. Even after you find out you have to stop doing it, it’s hard to turn away from. We think we have to push through; whatever needs doing is more important than giving our bodies time to rest, time to heal. But for people with ME/CFS, responding appropriately to the body’s tiredness is absolutely mandatory. If we don’t do so, we’ll get worse – at least temporarily, and sometimes permanently. Our energy allotment will go down, down, down – and we’ll have less and less energy to “spend.”

So, because of Item #1, Item #2: Rest.

If you suddenly find yourself inexplicably much more tired than you used to be, the way to stay within your energy envelope is to do less and rest more. And resting doesn’t require you to know for sure what is causing your tiredness – you don’t need a conclusive diagnosis in hand. You also don’t need blood tests, a prescription, to spend cash, or to buy equipment in order to do it.

Maybe that, too, sounds obvious – if you’re tired, you should rest, right? But the amount of rest needed in ME/CFS is a whole new ball game for most people. You have to make a real commitment to resting.

Because I’m talking serious rest. Enforced rest. Give yourself permission to rest. For several months at least, to see if it helps. Clear your schedule. Take FMLA. Quit your job. Shed responsibilities. Reduce the amount of stress in your life. Move in with family if you have them and you can. I know none of this is realistic – upending your life just to lie around and do nothing, and potentially drastically reduce your income? Sure, dealing with upending your life for months, maybe a year, is difficult, but dealing with upending your life permanently is worse.

It is a terrible injustice that this illness receives such a paltry amount of funding, and that because of that, there are not better treatments than simply respecting the limits created by the disease. But until we have those better treatments, resting first, and not when the disease forces you to, is what will give you the best chance at recovery.

Item #3: Where you are now is not necessarily where you are going to be.

When I fell ill, there was much less information on the web about ME/CFS than there is now. The two major things that I remember running across were Jodi Bassett’s A Hummingbird’s Guide to ME and Laura Hillenbrand’s essay “A Sudden Illness”, the latter of which was only a couple years old at that point. Reading “A Sudden Illness” was incredibly frightening. Hillenbrand described such awful events, and such terrible incapacity. I couldn’t imagine how she could endure it, and I was grateful that my case of CFS was not as severe as hers.

Well, it wasn’t then, but it eventually was – and even worse than what she describes, too. This illness is variable and changeable. Some people – the very lucky ones – get sick, are sick for a while, and get better or mostly better with minor limitations. Some people get sick to a degree, and pretty much stay at that level of illness from then on. Some people oscillate, getting worse and then better and then worse again. Some people get sick, then sicker, then even more sick.

So I would counsel the newly diagnosed to realize that a lot of things can happen – just because you’re not very sick now doesn’t mean you can’t possibly get worse, or just because you are very sick now doesn’t mean that’ll you’ll never improve. And a major part of the way not to end up very sick is – you guessed it, back to Item #2: Rest.

Item #4: You need a doctor with at least some ME/CFS expertise.

I didn’t think I needed an ME/CFS doctor, and I didn’t know how to find one, and when I did learn how to find one, they were all so far away that I didn’t think it was worth traveling to see one. And if I had had such a doctor, I might have been told Item #1 and Item #2, at a time when it could have done me more good than when I finally figured it out myself, and I might have heard about and started treatment sooner, and I might be in a better spot now.

Because I didn’t have an ME/CFS doctor in the early years of my illness, I was managed by my GP in a hands-off way. She didn’t know anything about treatment, or anything about ME/CFS specialists. And that’s not at all uncommon. ME/CFS is poorly understood by most medical practitioners. Don’t be a guinea pig, someone who is managed without knowledge, or someone who sticks with a doctor who tells you that you must be depressed, that you just need to exercise, or that your illness is all in your head because all the tests are negative.

An ME/CFS doctor who has seen a lot of the illness before you show up in his or her office will know the pitfalls that come along with not knowing what you’re doing in terms of dealing with this illness, and you’ll give yourself the best chance for a good outcome by being under the care of someone who can guide you along the way. You don’t necessarily need to go to one of the few super-specialists who only treat ME/CFS, but you at least need someone who “believes in” and is familiar with the illness. But I would say that if you can get to a super-specialist, do. (You can find ME/CFS doctors and specialists at the ME/CFS Wiki here.)

So those are my suggestions – the things I most wish someone had told me early on. And my story is the same as those quoted above. I did each one of these things wrong in turn.

  • I was a bit of a workaholic, and I had always gotten better after I’d gotten sick, so I didn’t think there was anything wrong with continuing to push myself, even though I was ill.
  • I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day.
  • I thought my case was a mild one, so I didn’t treat it with the gravity it deserved. Well, I only had a mild case until I had a moderate case, and then a severe case, then a very severe case.
  • I didn’t have a doctor who knew anything about ME/CFS, and I had never met anyone else who had it, so nobody told me how vitally important it was for me to rest and stay within my energy envelope.

I, and many other ME/CFS patients, have had to learn all of these – and many other things about our illness – the hard way. It shouldn’t be that way. It’s not as if our illness is uncommon, and it’s not as if it’s unpredictable. Until we know how to prevent and how to actually cure it, having good information, starting from go, is the key to allowing patients to have the best chance at recovery.

Now for those of you who have ME/CFS, what do you wish you’d heard when you first fell ill, or what were you told that was most – or least – helpful?

Edited October 8, 2013 to add: Nancy Blake has written an absolutely phenomenal “Radical Care Pathway for ME” that every doctor and newly diagnosed patient should have.

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83 Responses to To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

  1. Nathalie says:

    Well said Jocelyn!!! Couldn’t agree more!! Thanks for taking the time to put this together. Will be very helpful for newbies! If I had known about “my energy envelope” at the beginning I would have bought myself a nice, big padded envelope with the bubbles and sealed myself in it!! LOL

    • Jocelyn says:

      Thanks, Nathalie! I’m cracking up here at the idea of having a human-sized padded envelope to climb into. I’ve never seen any of those with a window, but personally I would want an envelope with a window. 😀

      • maddie says:

        hi im not really sure how this all works but i was diagnosed just 2 wks ago by my gp and im very scared and unsure by it just want a understanding friendly hi from someone without the oh its nothing get a grip look i seem to get from almost everyone

      • Jocelyn says:

        Hi there, Maddie, and welcome. So sorry to hear it sounds like you may be joining our company. I’m also sorry to hear you’ve already had people not take you seriously. It’s not an uncommon experience to have that happen – many people have no knowledge of this illness, and they end up judging it by its name or what they think should work to make someone who is normally tired to be un-tired. The good news is that there are a lot of resources on the web. If you use facebook regularly, you might check out XMRV Global Action’s facebook page. They post a lot of news about the disease. There’s more than one forum out there – Phoenix Rising and ME/CFS Forums are the two most active I know of. There is a big community of UK ME/CFS folk on Twitter – check out the folks I’m following and you’ll find quite a number of them. There is a huge amount of info on the ME/CFS Wiki (don’t bother with the CFS entry on Wikipedia – it has historically been not helpful). Also very useful is the National Alliance for ME website. It has great lists of symptoms and test abnormalities. I know you’re probably overwhelmed – it is a difficult thing to have to make the transition from well to sick – but give yourself plenty of time to rest and read a little bit here and there as you feel yourself able. You don’t have to learn everything and make treatment decisions right away – the best thing to do is just to rest as much as you can! Hope this helps a little.

      • qwerty says:

        phoenix rising forum is covertly run by the government to disperse disinformation. It is tightly censored to protect disinformation pieces. almost anything the moderators don’t want can be deleted on the flimsy and subjective excuse of inflammatory. Even disagreement with moderator can’t be posted

  2. This is great advice to people who are newly diagnosed, but it is also a good reminder to people like me who have been suffering for many years. Thank you, Jocelyn.

    Patricia Carter

  3. Gabby Klein says:

    It’s great and crucial advice! I too pushed myself in the beginning and was encouraged to do so by my primary care doctor and people around me. Had i “listened to my body” and rested right away, I don’t think I would have declined to the severe level I am at now. You are doing a big service to alert people about this. The problem though is that at first, one really doesn’y know whaat the diagnosis is and what they are dealing with. Now with the new ICC wanting to bypass the 6 month wait for diagnosis, people have a better chance at discovering what is wrong and take the appropriate steps.

    Gabby klein

    • Jocelyn says:

      Agreed – if you don’t know what’s wrong, it’s much harder to take the appropriate steps. In fact, I was thinking of the ICC as I was writing this. What a difference it would make to put a name to the symptoms right away, rather than having to wait around in limbo and doing ourselves a disservice by it because we’re not officially diagnosed.

  4. kathy d. says:

    Your statement above is very good. I got this disease so long ago, trying to remember what happened is like trying to remember the Middle Ages. After I was sick with a flu for so long — and I was very sick in the first year — my doctor, smart as he is, told me I had CFS. This was in 1986, though I got sick at the end of 1985. He told me there was nothing to do about it.
    So I read books eventually, what I could find. Katrina Berne’s first edition educated me a lot, and it also relieved my guilt about what I couldn’t do.
    I liken this disease to friends, saying I’m like a car with 10 gallons of gas for the week, and once they’re used up, there is nothing left until I replenish the tank. Only this week it feels like 5 gallons, not 10. I just had to cancel a doctor’s appointment because I didn’t have the energy to take a shower, get there (by cab) or type up the notes I had written out, which would have taken a cryptologist to figure out.
    Does anyone ever just get to annoyed about not being able to do things friends are doing, including having fun? Does anyone ever get short with friends because one feels left out?
    Does anyone ever get too tired to talk on the phone? Or to use the computer?
    My moods, including shortness with friends, come out of the blue and seem to take over.
    Does anyone relate to that?
    And by the way, I sent kudos to you and your spouse to being able to collaborate and be patient with each other while dealing with all of this. You both must be very special people. (I also credit those beautiful cats. I love cats and became allergic to them as an adult. I really wish I could have cats keeping me company and entertaining me. Nothing better than cat company.)

    • Jocelyn says:

      Sorry to hear you had to cancel a doctor’s appointment, Kathy. I have had to do that in the past as well. Do you have some help at home with activities of daily living?

      Your gas analogy is like the spoons analogy on the website But You Don’t Look Sick. Once the gas is gone, it’s gone.

      Yes, I totally identify with your frustration of watching friends having fun and not being able to join in. It hurts to feel left out for any reason, but I think this one is especially painful, because not only do you feel left out, you couldn’t be included anyway.

      I can hardly ever talk on the phone. It’s enormously taxing to me to have to listen and think and respond and speak. It’s just too much most of the time – and I miss being able to talk to my mom enormously.

      And thank you for the kind words about me and Chimp. He is one in a million. I will probably write about the two of us as a pair at some point. He has some unique life experiences that made this circumstance not so overwhelming when it arrived as it might have been for some. We love our cats too! I would feel very deprived if I didn’t have their company. They bring us a lot of joy with their antics, and we are the kind of people who narrate their thoughts. It’s enormously entertaining.

  5. Baffled says:

    While my doc doesn’t know much about CFS, I was lucky that he wrote down a diagnosis of “post viral syndrome” on my note for work and I’m a data hound. I took that phrase and got on the internet and learned about CFS. Since I’m a researcher by trade, I knew how to identify reliable sources of information. I found CFIDS Association site almost immediately. The information on there helped me to understand what was happening to me. I learned about pacing. The next information leap was reading Dr. Bell’s book and attending one of his lectures. He explained the general course of the illness and the statistical chances for recovery. There are good sources of information out there. I think the worst part of this illness is not getting a diagnosis for so long. I knew what was wrong with me long before any doctor would admit it to my face. They are so scared of lawyers and insurance companies. Without a clinical marker this isn’t going to change any time soon. BTW, my doc tested me three times for Lyme because it was an easy test to do. He was really hoping I had Lyme instead of CFS because he knew how to treat that.

    • Jocelyn says:

      Baffled, I came upon the “post-viral syndrome” word early on, too – maybe six months or a year in? I liked it much better than CFS. But seven years in, it seems sort of funny to call it post-viral syndrome. It’s extremely post at this point!

      I remember coming upon the CAA website, too, and I felt frustrated with it – all it seemed like they had was a quiz about whether you had CFS. Well, I did, and I took the quiz, and it said I did, but I don’t remember coming upon anything particularly useful there. I don’t know if there was useful stuff and it didn’t seem so at the time, or what.

      I haven’t read Dr. Bell’s book – I’d like to – but I have kept up with his web newsletters for a long, long time now. He’s definitely one of our great assets – so thoughtful and helpful.

      And yep, you hit on the same point Gabby did, above – waiting around for a diagnosis does us a great disservice. That’s why I made that point about resting – that you don’t need to know why you’re doing it to do it.

      Oh, the things we are tested for! And the hope with each new test, early on – that it will turn up the singular problem and it’ll be quickly fixed, and the disappointment that follows.

  6. CJD says:

    What would I have liked to have heard from doctors, loved ones, friends, co-workers, church members, during all these years of mind-numbing pain, endless bouts of fatigue, depression, insomnia, sleeping marathons, nausea, migraines, and seemingly endless list of related symptoms & illnesses? Just three simple words: “I believe you.”

  7. Kerrie says:

    Things I wish I’d heard: ‘You are sick. You need to take it seriously. You need to listen to your body. You need to rest.’

    And I wish I’d heard words of support from family and friends. I wish people had believed that I was really sick. Offered support, either emotional or practical. Anything, other than the complete silence.

    If others had taken it seriously, perhaps I would have, too, and I’d be healthier today.

    The thing that was the least helpful: ‘You should exercise more.’ And to the neurologist who said ‘Sometimes we just have to live with the body we’re given’, I offer a big fat raspberry.

    • Jocelyn says:

      Well said. You hit just about every unhelpful thing that’s said to us in your comment, Kerrie. I join you in the raspberry for that neurologist. Simple human empathy from doctors is so important, and ME/CFS patients have so many stories of not receiving it.

  8. I’d partially disagree with #4. You either need a doctor with CFS/ME expertise – or an open-minded doctor and CFS/ME expertise yourself. The latter is much better than most CFS/ME “experts” (I’m talking about doctors who consider themselves experts, not the real world-class experts like Cheney, Goldstein etc).

    In many countries there are no CFS/ME experts. That was the case with me when I still lived in Finland. But I found an open-minded doctor who was willing to listen to me, who immediately realized I actually knew my stuff. He was willing to prescribe me the treatments I wanted to try (low dose naltrexone, piracetam, nimodipine etc). As a result my illness progression stopped and I got about 80% better. He now treats other people based on my ideas (well, not really mine – ideas I adopted from research and other CFS/ME experts, but ideas I gave to him). I still wouldn’t call him a CFS/ME expert, but he can definitely get good results in many cases, even if his treatment repertoire is limited compared to the real experts.

    I’d also add #5: it’s important to realize that treatment _does_ exist. And it can make a _huge_ difference. Many people still think that there are no treatments for CFS/ME, or only symptom-based ones like antidepressants and sleep aids. Sigh. Once I got a whole torrent of abuse from a bunch of Dutch Twitter users who flamed me and laughed at me for even _suggesting_ that CFS/ME is treatable (of course I wasn’t talking about cures or miracle results or anything). I offered some of them a free PDF copy of my treatment book to prove them wrong, but they refused even that and just kept on abusing me. It felt absurd considering there are several good CFS/ME doctors in this small country, some people still thinking that CFS/ME is untreatable. It shouldn’t be happening in 2011!

    As someone I know said: positive attitude matters if you want to get better. Not because positive attitude is going to make you any better, but if you don’t have hope, if you don’t believe there may be a treatment that helps you, you aren’t going to pursue treatment and your chances of getting better are much worse.

    • Jocelyn says:

      Oh, I agree with you there, Maija. If someone has the ability to do that, they can help themselves a great deal. Two things: First, I mostly meant this for the newly diagnosed, and getting up to speed on an enormous new body of knowledge, when you are trying to deal with the upheaval of being terribly sick, is really hard. Second, I think you are an unusual case – few patients early on would have the ability you obviously do to track down, assemble, and interpret information. (Thanks for doing it for us, by the way – you’ve done the community a great service by that.)

      And you are fortunate to have found the a doctor who was willing to help you try things. My experience bringing information to doctors has mostly not been as good as yours – mostly it’s seemed like they don’t trust patients to know what they’re doing in terms of evaluating what is good and what is bad information. My current doc, however, is good in this regard – he accepts quite well that seven years at this has enabled me to accumulate knowledge that he doesn’t have.

      Yes, realizing there is *something* to be done is absolutely vital – because if you don’t, as I didn’t for a long time, you won’t do anything!

      • Well, it’s not like I didn’t see dozens of doctors first before hitting the “jackpot”! But I think it’s a bit depressing to assume that the only way to get good treatment is to find an expert. If you live in a country/area with no experts and can’t go elsewhere, does that mean you’re screwed? Most likely there is at least one doctor who is open-minded.

        Doing extensive research like I’ve done takes ages, true, but even with much less work you could find some reasonable treatment options and bring them to your doctor’s attention. I know several people who’ve been able to get low dose naltrexone or antibiotics from ordinary GPs who’ve been more open-minded than their colleagues. The odds are against you, as always with this disease, but they aren’t hopeless odds.

        There needs to be hope. Not false hope, but reasonable hope. That it’s possible to get medical treatment that makes you better, and you have better chances of getting it if you locate a CFS/ME expert, but even without one it’s possible. (And meanwhile you can potentially improve by taking some nutritional supplements.)

  9. Lisa Petrison says:

    I wish I’d heard in 1994, “Toxic mold has the potential of making people with this illness permanently worse. Go home and look for toxic mold in your home, and remedy the problem in the right way if you find it.”

    • Jocelyn says:

      Yes, it’s bad enough to have to deal with the illness without anything to exacerbate it…and there are so many things, like your mold experience, Lisa, that can exacerbate it.

      • Lisa Petrison says:

        Hi, Jocelyn.

        Your response makes it seem like developing ME is something that is totally unrelated to exposures to mold toxicity. I don’t have proof that it’s related, but there also is no proof that it’s not related.

        An awfully lot of people seem to get sick with this illness while living in terribly moldy homes, or in clusters in particular locations (which could be related to an outdoor toxin such as a biotoxin), so the idea that we have been poisoned with specific inflammatory toxins and that this makes us susceptible to having various viruses or other pathogens go active is a concept that is not wholly lacking in plausibility, I don’t think.

        Paul Cheney, for instance, stated last year that factors that might make XMRV go active include a vaccine, a Lyme infection, a flu or a toxic mold exposure. Regardless of whether MRV’s are a factor in this illness, other pathogens might operate in the same way.

        From what I have seen, almost all of the scientists investigating the role of retroviruses in CFS have suggested that even if one is present, it is likely not the only factor causing the disease. For instance, here’s a comment from the Courgnaud commentary to the Lo et al 2010 paper in PNAS: “These observations suggest a scenario in which retroviruses, MLV- related agents and potentially, other viral agents may cross-complement to promote coinfection and enable pathogenicity. The current data suggest that a variety of xenotropic and polytropic MLV can be found in North Americans with and without disease. To add to this bewilderment it is likely that more than one environmental agent impacts on the development of both CFS and prostate cancer.”

        The most commonly discussed “environmental agents” that seem to be associated with CFS are mercury and toxic mold, and yet for toxic mold especially, there has been no research whatsoever.

        Hopefully this avenue of inquiry will be explored, because insofar as toxins are causing people to be more likely to get sick with this illness (even if there is some other cause as well), we should know about it.

        Best,

        Lisa Petrison, Ph.D.
        lisapetrison at yahoo

      • Jocelyn says:

        Lisa, my response was purely based on your statement that “Toxic mold has the potential of making people with this illness permanently worse.” I was agreeing with you that yes, toxic mold exposure could exacerbate the illness.

        I’m one of the people whose illness was provoked by a flu shot, and Cheney and I discussed that once I became his patient many years later.

      • Lisa Petrison says:

        That story about your flu shot was really scary, Jocelyn. We need to collect more anecdotes like that, with details, and then share them more widely, I think.

        For instance, here I mentioned it on a Chicago-area doctor’s FB page (in the comments on a post from Dec. 1):

        http://www.facebook.com/pages/Park-Ridge-MultiMed/95814231866

        Thanks much for sharing your experiences in this blog.

        Best, Lisa

      • Jocelyn says:

        Thanks for sharing that, Lisa. I know some will remain skeptics no matter how much evidence mounts, but like you, I appreciate anyone who uses some of their precious energy to share their story.

      • E. Milo says:

        I can’t believe I never commented on this in the past- maybe I did on one of your other posts. I, too, came down with ME from the flu shot. I believe my body was primed and ready from years of stress and sleep problems and a couple recent viruses, but until the flu shot, I felt fine. One week later, my life turned upside down. Thank you for this blog, it is wonderful.
        elizabethmilo.com

    • Nick says:

      Hi Lisa,

      do you have any information on potentially viable treatments for CFS that may have been in part due to Toxic mold? I believe this could be a partial factor in my girlfriends illness as she lived in rented accommodation with bad mold for a year before gradually going downhill.

      Kind regards,

      Nick

  10. kathy d. says:

    Hi Jocelyn,
    No, I don’t have help at home. That’s why I get food delivered and prepared, but have to be quite careful about it as it can be expensive. And that’s why my newspapers, envelopes to be mailed, new clothes (mail ordered) and dust piles up. Once every few weeks I try to clean dust in my bedroom, but can’t tackle the apartment. Laundry rarely gets done. Clothes are rinsed out in the sink and hung up. Apartment repairs aren’t done for ages unless it’s an emergency. That’s the way it is. My friends are either very busy or are getting older and preoccupied with their own tasks and I can’t ask them. On friend who changed my lightbulbs, did light shopping and took out mail has moved out of my city due to his own hassles.
    I just make do with what I can.
    I lately have had hassles with one friend on the phone. Though she is great, she gets very wound up and loud. It affects me physically and I have to go, too much stress. This is a drag.
    It’s interesting you use the term “dustbin of history.” I have used that term about Darth Vader Simon Wesseley and all other CFIDS-deniers; one day (and hopefully, as soon as possible), they will be swept into the dustbin of history.
    My hope and every CFIDS-sufferer’s is I presume that the Norwegian Rituximab studies, and those by Lipkin, Komaroff, the Lights, Klimas, Enlander’s researchers, etc., will one day soon stop the nonscientific “professionals” in their tracks, turn them on their heads and lay the basis for real, effective (and non-toxic) treatment.
    And on cat-support, I sometimes go to You Tube and watch kittens playing. It’s therapy. There’s nothing like seeing two cats puffing up their tails and back fur and jumping up sideways and racing across the room!

  11. As Jocelyn’s Mom, I miss being able to talk on the phone and visit. I am incredibly proud of her ability to write about ME/CFS, to reach out to others, to persist in managing her illness, to be who she is – a generous, intelligent, gifted, witty woman. I miss her at family get togethers more than I can express. She is my heart beating in another place but nonetheless a central part of me and vital to my existence.

  12. Annette says:

    Oh – those four things you did wrong… you are telling my story too. For me, I really would have benefited from understanding what pacing really meant in practical terms.

    But I have to be honest, I was also in denial for a very long time, and I do wonder if – even given the right advice – I would have continued resisting until I finally accepted it myself having exhausted (literally) all other possibilities first.

    Your blog is terrific – please keep doing that you do so well.

    • Jocelyn says:

      Thanks for the kind words, Annette. Yes, I don’t know how I could have gotten this information though my own thick skull either – in some way I think I probably didn’t believe that things could get as bad for me as they eventually did. That’s just human nature, though, so don’t beat yourself up for it, and I won’t either – we just don’t have a good sense of our own vulnerabilities.

  13. Pingback: Guest post: to those newly diagnosed with ME/CFS | the digital hermit

  14. Chris says:

    This is an excellent post. I wish someone had told me this at the beginning. The problem is I would not have believed it. It is information that often has to be learned the hard way – and sometimes even that does not work. And yet when I see what you have written, I think it should be posted everywhere, at the top of every blog and webpage related to this illness. It is so important that you have stated this, and so well too. I appreciate the comments of Maija Haavisto, one of the true heroes of this illness treatment – and of course Lisa too. What a great post! Thanks,
    Chris

  15. kathy d. says:

    It doesn’t even work with me and I’m having my 26th anniversary with this illness. I still push too far and then am homebound for days. One thing I deal with is that nearly every medication I take, including antihistamines, rev up my engine as if I had tons of caffeine. And I take halves of pills. Then once in awhile if I have to do something or go somewhere (nearby) and I can barely walk a few blocks, I have to rely on iced coffee.

  16. kathy d. says:

    The drive to do, to go, to work, to have fun, to be out in the world socializing and being with people, as well as accomplishing things is so basic to our beings, no one should be faulted for doing things, even if we overdo them. And no one should take themselves to task for trying to be out in the world and being involved in it, even if we repeatedly find ourselves worn out.
    Pacing is hard work, finding one’s own limits is tough, too. And these limits can change over time.
    Finding what we can do that gives us some modicum of contentment with out lives is key. But the overdoing it — who doesn’t do that sometimes? It’s human.

  17. Sue says:

    Jocelyn,

    I, too, got sick after getting the flu shot. I didn’t get the flu. However, exactly one week later, I awoke one morning to what I thought was a pulled muscle in my chest. I had trouble getting dressed, driving to work and reaching out to grab my coffee from the drive-thru window. By the time lunch arrived, I decided it was time to see the doc. I went to the nearest clinic where I told the nurse and physician on call that I had a flu shot a week earlier. I also informed them that I had been sick when I got the shot. The doc never batted an eyelash. It was as if I had not said anything at all. It simply wasn’t responded to. Hence, when I was told that my entire chest wall was inflamed without any explanation of why this was so I was feeling really uneasy. The doc prescribed an anti-inflammatory and sent me on my way. Thereafter, I had other inflamed muscles, misdiagnosed carpal tunnel syndrome and eventually pain right down to the bottom of my feet. There were moments when I was at work and couldn’t find words when communicating with my co-workers and supervisors. It was as if I just couldn’t get the words out. My spouse (now ex-spouse) came home with different ideas of what he thought it might be. One day he came home and said, “Maybe you have Fibromyalgia.” I laughed. “Sure”, I said. “I’ll humor you.” Just for fun, we found the tender point test on the internet and he picked a spot he thought he would like to try. That one little touch nearly sent me out of my skin. I went to the doc still disbelieving that she would make any diagnosis. By that point in time, I had had so many tests it wasn’t funny. All I knew was that I hurt like hell all over and I had no idea why. I was hoping that, at the very least, the doc would find out what was wrong and then swiftly provide treatment to “fix” whatever was ailing me. The doc did make a diagnosis. Her conclusion was simply, “It certainly looks like you meet the criteria for Fibromyalgia.” This was later confirmed by a rheumatologist on more than one occasion. As an aside and IMHO, a rheumatologist is NOT a specialist in treating Fibromyalgia. What does a rheumy know about the nervous system and the workings and underpinnings of pain? Needless to say after 10 years, I am still wandering around in the dark.

    Yet another point that I find fascinating is Lisa’s information about toxic mold. I have been unable to point one finger at a single source of my illness. I have theorized that the building that I worked in is a toxic environment as I know several people who have come down with Fibromyalgia where I have just recently retired from. Why so many people with Fibro in one place?

    Furthermore, I know that stress has had quite a drastic effect on my health, my body & the progression of my illness. The greatest source of my stress was my working environment.

    If I had known one single fact being newly diagnosed with Fibromyalgia, it is that STRESS is the number one factor that influenced my decline in health. It is important to note that I do believe I have Chronic Fatigue as well. I did a complete and extensive questionnaire at Fibromyalgia and Fatigue Center’s website wherein one conclusion was that I also had Chronic Fatigue.

    As well, I had no idea that resting could very well be one thing that could be a determinant of the progression of my illnesses. I was fed the idea that resting was simply an unproductive coping mechanism and that it was often “not helpful” and that exercise is the number one determinant to help improve my health. HA! How laughable!!!!!

    I look forward to a time when a truly revolutionary person looks to the medical profession and says, “You’re clueless!”

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  20. Patrick says:

    Hi Jocelyn,

    Thanks for the note you left on my blog. I appreciate that there are other PWMEs like yourself out there willing to give advice to us newbies!

    I’ll be checking back.

    Patrick

  21. Amulya says:

    Indeed the best advice is not to overdo oneself. But it is very hard to know how much you can do: CFS is so irregular, it’s unpredictable how tomorrow will be. I can have a good day today, maybe even a few in a row, or maybe I can have a few months where I have to stay in bed, but I never learned to judge my energy levels (and I am already happily together with CFS for 27 years)

    The biggest mistake I made was overdoing to the point where I completely burned myself out and never regained that energy (which wasn’t great, but to me now looks like a lot) back anymore. In my case it was trying to finish primary school and high school, which I did, but at a massive cost and little gain. I could have learned a lot by reading books and doing school at a very slow pace instead.

    I didn’t know I had CFS and doctors couldn’t figure out what was wrong. I just thought it would cure when I grew up. Maybe it could have been better if I didn’t do what I did and I’d recommend people with kids to be very careful with them, to make sure they don’t overdo, because it can mess up a kids future.

    Btw I was diagnosed 17 years after I got CFS. It started when I was really young. Not suddenly, but extremely slowly over many years, so slow that it was hard to notice till I suddenly was unable to do things I could do before, like long walks. But I have always been a long sleeper! As a baby I already slept more than others. Good thing: I love sleep!

  22. Jessica (Brisbane, Australia) says:

    Hi Jocelyn (& everyone!),

    I am a 28 year old woman from Australia and was diagnosed with CFS late last year after suffering from extreme tiredness for over 10 years. It was getting worse, something I couldn’t just fob off anymore and laugh at the “Nana naps” I always had to take – so my fiance, a Pharmacist, convinced me to take it more seriously and to see his Doctor whom he had great confidence in.

    I had seen multiple doctors over the last 10 years and each just said “exercise, reduce your workload, rest, etc” and that was pretty much it … finally I have found a Doctor who is taking me seriously, which is nice – but I have a feeling that it is mainly due to the fact that he knows my fiance, as he really doesn’t know what to do with me – but it’s a start. I have been for multiple blood tests and have trialed several different medications (currently on a new one – Pristiq) and have been referred to a Psychologist to help me find coping mechanisms for dealing with CFS.

    I have been doing full time study for the last 2 years while undertaking my Bachelor of Education (Early Childhood) and all was going good – I was getting excellent results in the beginning, even though I was tired and still had to have my ‘Nana naps’ every now & then – but my results slowly began declining the more tired I got and came to a head at the end of last year. I thought it was just the pressure and stress of uni that was making me more tired, so I thought it would be great to have a 3 month break over the summer to recuperate and start fresh this year. I started the year out ok, not as well as I would have hoped, but I truly thought I could get through the semester, however unfortunately just recently I have had to reduce my workload to half, so I am now only studying part time, which is quite disappointing for me, as instead of graduating at the end of next year, I have now doubled the time I have left. I have found that my condition has worsened quite drastically over the last couple of months and I am getting increasingly frustrated with not being able to do the things I ‘used’ to do not that long ago …

    It has been quite comforting, I guess, over the last 2 days finding forums and blogs about people that are going through, or have gone through the exact same things as me. I felt that I was so alone and helpless, as although my fiance is extremely supportive – he finds it hard to truly understand how I am feeling and what I am going through on a day-to-day basis. My family don’t really understand either, but I can’t blame them when even I can’t understand it.

    Anyway, I just wanted to say a big THANK YOU for this post, as I have often felt guilty for ‘resting’ so much, I have been made to feel like I should be up exercising or being active, when all I have felt like doing is sitting on the couch zoning out to some tv show and getting lost in their lives instead of having to deal with my own. I am lucky to be organising my wedding at the moment, as that takes my mind off of the way I’m feeling and usually makes me happy – however lately, even that has become such a task. Fortunately a lot of wedding planning can be done online these days and I can just sit on the couch or in bed with my laptop and still feel like I am accomplishing something each day instead of just resting or sleeping and wasting my days away.

    I look forward to reading many more stories about people dealing with CFS and finding inspiration to keep going and not be disheartened by lack of results with different methods and medications.

    Thanks again!
    Jess. 🙂

    • Jocelyn says:

      Welcome, Jess, and you are so welcome. Thanks for taking the time to share your story. I’m glad to welcome you, but sorry about it at the same time, if that makes sense. And best wishes on your engagement! At ten years in and still able to manage some degree of schooling, you’re doing much better than a lot of folks.

      Yes, it makes an enormous, enormous difference to find out how not alone you are in this illness. I went many years before meeting another person with it, but now know tons between blogs, facebook groups, twitter, and forums. And it is such a relief to know people who have been treading and are treading the same path. We can help each other a lot with our thousands of person-years of experience.

      Check out the blogroll at right for some other folks who are writing about the illness. If you’re on facebook, look up the page XMRV Global Action. They do a great job of putting out the news of the illness. There is a huge ME/CFS community on twitter that’s easy to hook into. The Phoenix Rising forum is probably the most active forum. There’s also the ME/CFS Forum, and they have a great wiki. HealKick exists for young sufferers.

      Hope some of this is helpful, and hope you’re feeling as well as possible soon!

  23. Deborah Shelton says:

    I came upon this blog quite by accident as I don’t have ME/CFS. Instead I have had a very severe soft tissue infection and have been on very strong antibiotics for a few weeks. The aim of my google search was to find a way to cure fatigue as I have a 1 year old and cannot force myself to get up in the mornings. I cannot do anything. I wanted to leave a comment to say that this blog is excellent, not only do you help people with ME/CFS, but you also help the wider public with your simple yet effective advice to rest. Nomatter what you have, if your body cannot be active, do not force it, forcing it will only make things worse and never better. It sadens me to hear that people do not take this seriously as from the little experience that I have had of my body just not being able to do the simplest things, I will to the end of my days defend anyone who is going through the same thing. With that said, please keep up your blog and I will definately be following

    • Jocelyn says:

      Welcome, Deborah, and thanks so much for your kind words! I’m sorry to hear you’ve not been feeling well – I certainly hope you’ll be healed up and back to normal soon. Yes, our bodies only heal in their own time, and it can be difficult, scary, and frustrating to deal with that. It sounds like you’ve come to terms with it better than many of us did at the beginning, and I hope that’ll stand you in good stead in the coming days. Hope to hear from you again along the way!

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  25. carly says:

    thank you for such great advice. I’ve been sick with fatigue, and the many symptoms associated with ME. after numerous tests all being negative I’m pushing for a diagnosis after the new year. luckily as a specialist nurse in diabetes I quickly began researching and emailed an author of a book about an introduction to ME. she advised me to rest, rest and rest. I took her advice and the symptoms, particularly the walking have improved slightly. I even managed to have Christmas lunch with the family due to understanding the energy envelope and resting before and after. what does concern me is the lack of knowledge and understanding of this illness in the medical profession. my own consultant who I have worked with for years has told me I need aggressive exercise treatment and quickly to encourage a quick recovery. he is a senior medical consultant. it feels that you are banging your head against the wall with people when you are at your most weakest. I was thankful to see your post on this website as I was thinking I was going mad with conflicting advice.

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  29. E. Milo says:

    I reposted this on my blog today. I hope that’s okay!

  30. Curiosity says:

    Yes, yes, yes, yes, yes, and yes.

    Do you know, I read the same Laura Hillenbrand essay, and had the exact same “phew! Glad my case is a mild one!” reaction? Heh. I remember having a long conversation with my husband JUST BEFORE MY HELL CRASH about how some poor people with this illness even have to be in a wheelchair sometimes (the horrors!). We had this conversation less than a month before I became bed ridden and so ill I couldn’t even roll over on my own.

    This post should be printed out and handed to patients when they get their diagnosis (or before). Seriously.

    • Jocelyn says:

      Ha! I figured I couldn’t be the only one who did that. My sympathies, Curiosity. Yes, I wrote this precisely because nobody was there to hand this to me – or you! The good thing is that I do now get a lot of hits on the blog from people searching for information for the newly diagnosed. If I can save one person from this fate, mine will be less in vain.

  31. Jane says:

    I’ve not been given a diagnosis yet, but my GP believes I’m suffering from ME. Very emotional at the moment, but thanks for the information. I’m finding it very hard to absorb any information at the moment. I’ve always been a workaholic and cannot believe that I’m unable to do it anymore. I think when I’m ready I will be asking you for much more advice.

    • Jocelyn says:

      Oh, Jane, I’m so sorry to hear that. I don’t blame you for feeling emotional – it’s an enormous blow. There is life after an ME diagnosis…of course it is not the same, and there are undoubtedly many difficulties you might not previously have faced, but there are many ways to adapt. However, what you’re doing in terms of facing up right away to the idea that you can’t proceed as you always have is really your very best chance at recovery, or at ending up only mildly affected (though even mild ME is admittedly significant). I hope you will be one of the very luckiest ones. Do reach out if you have questions – if I don’t have the answer, there is a huge community of us tied together by the internet. If you’re in the UK, there’s an especially active ME contingent on Twitter.

  32. Kate says:

    Hi there

    I came across your blog recently and in particular the section for the newly diagnosed with M.E. It was really refreshing to read this and it provided the exact protocol for people in this situation, so thank you for this. I am still in the actute stages of M.E and thankfully from research and with my mum having the awful disease, have been resting completely. Having said that, I do feel my condition is getting worse but that’s probably to do with things being so early on. One thing I wanted to ask you about was cognitive/mental rest. One of my worst symptoms is cognitive fatigue and I haven’t been able to watch tv, read a book for a couple of months now. I have limited talking to people and using my phone (ok for a short time lying down) to once a week for 20 mins. This doesn’t seem to have any adverse affects however I wanted to ask your advice. Should I abstain completely from cognitive things while I am in the early stages? I just don’t want the little bit of phone use I do to set me back in the long run. Thanks 🙂

    • Jocelyn says:

      Kate, I think the answer really is paying attention to what the effects of those activities are. If you get payback/post-exertional malaise that’s easy to link to a specific activity, it’s a definite no. Pay attention to how long it takes you to get back to baseline after that phone call. If that starts to get longer, cut back. If it shortens, be glad! If the level that you’re doing it at doesn’t seem to have harmful effects and doesn’t seem to be directly making you worse, it’s probably (but not definitely) okay. I would say that you’re limiting your activity to such a rigorous degree that I would not tend to think that you would be pushing your boundaries without realizing it.

      • Kate says:

        Hi Jocelyn

        Thanks so much for the reply.

        I guess it’s just about listening to your body and knowing when to stop (although we all know that can be hard!) There is a baseline illness there as even by doing nothing I can still feel ill.

        As my mum says ‘be kind to yourself’. I am definitely doing that and hope that it pays off!

        I hope you’re are doing ok.

        Take care 🙂

  33. prioris says:

    why does my comment say “Your comment is awaiting moderation.” for so long

    • Jocelyn says:

      Hi Prioris – I have been working for a while on a set of commenting rules for my blog, and have finally published them here. There were elements of that previous comment in conflict with those. Nothing personal – each of us who writes a blog has to decide how to manage the comments section, and as sick as I am, I place more restrictions on comments than most in order to minimize my own stress.

      • prioris says:

        I’ve had ME/CFIDS/CFS or nearly 55 years. I was one of the few hit severely somewhere under the age of 5. The disease didn’t officially exist when I got hit. You should get a ciguatoxin test to verify the ME diagnosis. It does sound like you have the disease. Many people get diagnosed by doctors who know nothing about the disease.

        Here is some additional info

        http://www.earthclinic.com/CURES/chronic_fatigue_syndrome_questions.html#Question_4675

        http://www.earthclinic.com/CURES/chronic_fatigue_syndrome_questions.html#Question_4676

        I wouldn’t worry about over doing it. I way over did it for decades. It’s not like your health will be damaged more. I am more active than most people with this disease because i learned that i could do things at a very early age and that helped me with very severe periods. i can’t recommend this path for most people because it requires a lot of internal fight in ones personality. this is a complex disease with many different physical and mental aspects combined. i took an alternative route than most people with the disease take.

        Finding doctors who know anything about the disease is very difficult. One of the best things I ever did was become my own doctor, I haven’t needed to see a doctor in over 25 years. I have trained myself in naturopathic cures for many health conditions.

        I removed the only possible things that could violate your rules regarding curing rheumatoid arthritis. They can email me for the information.

        if someone needs any help, email me at prioris at excite.com. i will be happy to assist.

      • Jocelyn says:

        Prioris, the links you provided will be difficult for someone new to the illness to read and understand. I am going to quote Rich VonK on ciguatera: “Later work by Hokama et al. found that the positive results of PWCs on the ciguatoxin test resulted from cardiolipin, which is found almost exclusively in the mitochondrial membrane in humans. I believe this is additional evidence for damage to these membranes in CFS. There has been electron microscopy examination of these membranes, showing extensive damage. There is a great deal of evidence for oxidative stress in CFS, and the most vulnerable molecules are those in the phospholipid membranes of the mitochondria. So I think all of this fits together. It doesn’t have anything to do with toxins. It’s just that part of the ciguatoxin molecule is sufficiently similar to part of the cardiolipin molecule that this antibody test responds to both.”

        For those who are new to the illness, a more complete list of tests to diagnose ME can be found at NAME-US.

        I vehemently disagree with the idea that overdoing it is not something to worry about, that to “fight” is the way to deal with ME, and that to do so cannot damage one’s health. Besides the patients above, I cannot even begin to number the amount of people from whom I’ve heard that the push-crash cycle has caused their function to deteriorate. I am bedridden now because I took a “fighting” approach – that was my personality – and consistently overdid it in the early years of my illness. I went down stairstep style and never again achieved each level of function I lost. Fighting brought me to the point I’m at now, and it was only by ceasing to fight and living within the limitations of the disease that I stopped deteriorating.

        Finding knowledgeable doctors is difficult, which is why I provided the link I did above. Co-Cure’s Good Doctor List is another source. If you haven’t needed a doctor in 25 years despite having ME and only need naturopathic cures, you are very fortunate, and very unusual. For someone who is newly diagnosed, though, a good doctor who knows this incredibly complex illness can save them from many dangerous missteps.

  34. Curiosity says:

    I have to agree with Jocelyn that overdoing it can most definitely damage one’s health more. That the condition worsens following exercise or activity is one of the cardinal symptoms of ME, and repeated crashing can definitely trigger permanent or long term loss of functioning. It isn’t a matter of desire or will or fighting spirit. There is sadly no negotiating with this illness.

    For many of us, overdoing it unfortunately really does make one’s condition much, much worse. I had a lot of determination, and keep going longer than I should have, and tried to push through my limitations, and suffered a swift and dramatic decline in capabilities as a result. I’ve now been almost entirely bed ridden for more than three years. I wish desperately that I could go back in time and warn myself about the danger of repeated crashing and how severely damaged it could leave me. Crash avoidance has helped immensely in speeding up the pace of my recovery now. I only wish that I had learned that sooner.

  35. Emma says:

    I have been sick for just over a year now. I’m doing a teacher training degree and really pushed myself through my final teaching practice. Now I am suffering the consequences in my final few months of university where I am very barely coping.

    Now is the time where you look for teaching jobs for September. After reading lots of articles and now this I am convinced I should take the next year to rest.

    My mother thinks I should be looking anyway because ‘I was better during my placement’ but that’s why I’m sitting here even worse.

    It’s really hard to know what to do 😦

    • Jocelyn says:

      Emma, I’m so sorry to hear you’re ill. The advice I’d give is this:
      – If you decide to take the year off, it’d be easier to find work mid-year than take a teaching job and stop it mid-year.
      – The earlier in the illness one starts resting, the better one’s odds.
      – If you’re already worse, that’s a big red flag to reassess your energy output.

  36. Pingback: 5 Top 'Living With CFS' Blogs To Read (not including mine!) The Get Up 'N' Go Guru

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  39. Julie says:

    Exactly true. This should be taught at Medical School. I’ve been sick 22 years and have had such a hard time turning off my A-type personality. I learned the hard way. People find it so difficult to understand why, after a big event, I would be sick for weeks or months. I always use the “money in the bank” analogy. But they just don’t get it. I could go on and on.

  40. MARK CAMENZIND says:

    We clearly need more NIH funding in USA and worldwide to understand, diagnose, cure M.E.

    A leading reasearch effort is at End-MECFS.org. Prof Ron Davis at Stanford would spend this money wisely since he is a top expert and his son Whitney is severely affected.
    If anyone want bumper stickers for your car and will use them to gain public visibility , I can send you two if you provide me a USA mailing address. Current version is 3 lines in 3 colors:

    Unbroken: Cure M.E.
    Myalgic Encephalomyelitis
    END-MECFS.ORG

    Send me a request to mcamenzind@comcast.net and I will mail to you.
    My Son is severely affected, 21 years old, was excelling as Stanford student 2 years ago, now in bed 24/7.
    Hope you can all perhaps donate to above linked which goes to Openmedicinefoundation.org
    Be sure to request matching funds if you work for a company that does matching.

  41. Alison says:

    Dear Jocelyn

    Thanks so much for this. It is just so helpful. I was diagnosed last summer and have sont a year trying to come to terms with the diagnosis and explore what I can do without harming myself, its just such a long process and as you say so well things also change. Its also lovely to hear you say its so important to know what to do from the beginging as I was doin gall the worng things, pushing through, as thats whats usual and expected.
    again thanks for putting this out there
    Alison

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