Up Front by Emma Hart

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Up Front: Something Chronic

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  • giovanni tiso,

    I met one who recommended taking blood out of your system and then re inejecting it X hours later

    Autohaemotransfusion? It's a form of doping so I wouldn't be surprised if it did in fact boost your performance and decrease your fatigue levels.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Jeremy Eade,

    Great honest writing. Blogging at its best. Thanks Emma.

    auckland • Since Mar 2008 • 1112 posts Report Reply

  • Sue,

    Autohaemotransfusion?

    I never gave it a go, it seemed weird and freaky

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • Emma Hart,

    I think it's completely accepted that CFS is a very real disorder

    They did a survey of GPs here in the 90s, I'll try to find it, which found that about 90% believed CFS was real. That's one in ten doctors who think you're making the whole thing up. Then there's still considerable disagreement about whether it's primarily physical or psychological. It's a while back now, but the immunologist I was sent to because my white blood cell count was through the roof and I had antibodies my general medicine specialist couldn't identify was not a believer in CFS. On discovering my father was an alcoholic he diagnosed depression and sent me to a psychiatrist.

    Also, my WINZ designated doctor didn't 'believe' in CFS.

    I was lucky enough that my GP, horrified to discover I was receiving no treatment at all besides anti-depressants that hadn't worked the first time, sent me to Ted Pearson, a GP and acupuncturist who'd published on 'Tapanui flu' in the 80s. That was when I started to make substantial progress. Being believed could not be taken for granted.

    The yoga has been very helpful, primarily as exercise I could do that wasn't aerobic. And I could do it at home, at my own pace, and stop when I got tired.

    I could not have managed what I do now back then, and I know what a difference it made to me when people understood, so this is like giving back to my old self.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • George Darroch,

    That's one in ten doctors who think you're making the whole thing up

    I really do sympathise with the people who give up on the medical system entirely. Observation is the first and most important thing in science and medicine, but there are people whose relationship with it is fraught. I was sick of being told that my symptoms did not exist. Given that they were actually visible, I decided to trust my lying eyes.

    Actually, I haven't gone to a GP in over a decade, so I suppose that's me too. I work out what part of my body seems wrong, do research, and then visit a specialist - who actually knows enough to be truly useful.

    Any kind of inflammation reducing thing - virtually anything that will reduce the inflammatory markers in your blood - will be of benefit.

    Very much true of any immune disease. I've used hemp to great effect in the past.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • Lucy Stewart,

    And they seemed more sane than the one who recommended the copious amount of vitamin C

    Blame Linus Pauling for that - he got it in his head back in the fifties that it was some sort of miracle cure, and because he was a Nobel laureate it's never gone away even after it was conclusively disproved (that massive amounts of vitamin C were good for *anything* in particular.)

    Observation is the first and most important thing in science and medicine, but there are people whose relationship with it is fraught.

    It's that fine balance between relying on accreted evidence and subservience to orthodoxy; in medicine, where mistakes can be deadly, and nonspecific conditions easy to dismiss, it often gets tipped easily in the latter direction. How that gets changed, I'm not sure.

    (Of course, it also has to be *accurate* observation, which is a whole 'nother kettle of fish.)

    Wellington • Since Nov 2006 • 2105 posts Report Reply

  • Joanna,

    That's one in ten doctors who think you're making the whole thing up.

    And that's just doctors - then there's the whole rest of the world. One of the non-political reasons (and there are many political ones too of course) that I loathe the MP John Hayes was that I'll always remember him telling someone close to me who had to leave their job because of their OOS was so crippling "Oh, OOS doesn't exist". Um, make coffees all day and carry heavy plates every day John, and then we'll talk.

    (Sorry, I know OOS is different from CFS, is different from depression, etc. But I figured I'd mention it here because it's another one of those very hard to diagnose/fix/prove stupid things that my friends are overly inflicted with).

    Wellington • Since Nov 2006 • 746 posts Report Reply

  • Lilith __,

    Emma, and others here with first-hand experience of CFS -- thanks so much for putting it out there. Reading this post made me cry, mostly because it is so rare to see a sympathetic public discussion of CFS.

    I've had CFS for 25 years, and when I first got sick (following glandular fever when I was 13), understanding and acceptance among doctors was low, let alone among the general public. Always having to explain my disability to everyone, and then having to deal with their incomprehension, hostility, disbelief, or well-meaning advice gets old pretty fast. I've had some healthy times, sometimes several years in a row when my abilities are almost normal, and I've thought "Hallelujah, now I'm OK!!", only to eventually come crashing down again into illness and incapacity. I now expect I will be managing the condition for the rest of my life, and optimising my capabilities in any way I can.

    I have tried many many treatments, and found most of them did nothing. Acupuncture, gentle exercise, getting plenty of rest, eating well, and practicing tai chi have all given me some help in feeling better and making the most of the energy I have. And the love and support of family and friends has made it possible for me to cope.

    A couple of years ago I went to see an excellent counsellor who helped me to deal with issues arising from my long-term illness. Although it was a tough process looking at all my rage and pain and self-hatred, it was very healing. I don't suffer from depression, but it's hard to feel good about yourself when you're chronically ill. My counsellor helped me to separate my illness from my self-identity, and also to work on ways I could better manage my life within my physical limits.

    Recently I found I am Vitamin-D-deficient, which apparently is common with CFS patients. I'm now on supplements, which I'm hoping will help boost my immune system. There is some interesting research into the relationship between low levels of Vitamin-D and susceptibility to seasonal flu.

    There is some evidence that mitochondrial inefficiency is involved in both the fatigue and the fibromyalgia many of us suffer. There has been some very exciting research done at the Pacific Fatigue Laboratory in California which would support this idea. Basically they've found that the muscle-stamina in CFS patients is not only low, but it doesn't rebound to pre-exercise levels sometimes for days afterward. Which comes as no surprise to those of us with CFS!, but they can prove it in their lab using a standard test. If their results are replicated elsewhere, we could be looking at the first robust diagnostic test for CFS.

    My doctor suggested I take mitochondrial nutrients (Co-Enzyme Q10, L-Carnatine, Magnesium, and D-Ribose) to try to improve my stamina and muscle-weakness. Unfortunately these are not Pharmac-subsidised, nor will WINZ cover the cost as they are considered mere "supplements". And no pharma company is going to fund research into their effectiveness, because they are nutrients and therefore non-patentable. If anyone out there is looking for a subject for publicly-funded research, consider this! For the limited time I was able to afford to take these 4 substances, I did have some improvement. But without a proper scientific trial, we can't know for sure.

    With my mitochondrial function in mind, I have experimented with "interval training", short bursts of relatively intense exercise. The NYT has an article on the benefits of interval training. What I do is walk as briskly as I can for a few minutes, until I'm puffing, and then walk slowly or stop until I've recovered, and repeat. Although I'm tired afterwards, I seem to get a lot more benefit from this than from just having a gentle walk.

    Sorry if this comment is a bit long. I'm glad to have a forum in which to post this!

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Lilith __,

    Oops, also meant to say that

    mitochondrial nutrients (Co-Enzyme Q10, L-Carnatine, Magnesium, and D-Ribose)

    are taken by endurance althletes to speed up muscle-recovery after exertion, and also by some patients with heart failure to extend their limited stamina. There's every reason to expect CFS patients would benefit.

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Ian Dalziel,

    the whole tooth and nothing but the tooth...

    ...and gave up on dentists 2 decayeds ago.

    that scores with me!
    it should be on a plaque somewhere...
    :- )

    a natural bent...

    The yoga has been very helpful, primarily as exercise I could do that wasn't aerobic. And I could do it at home, at my own pace, and stop when I got tired.

    watched some of a piece on a back doctor on Close Up tonight and my partner noted most of the beneficial positions shown were yoga asanas any way...
    (and could someone send Hoskings a comb...)
    Introducing yoga to prisons might be a helpful (and low cost) initiative too...

    blood bothers...

    Autohaemotransfusion?

    how is it stored? I wonder if exposure to sunlight (or other fields) might have some effect before replacing the blood in the body?

    did someone say boo...

    Very much true of any immune disease. I've used hemp to great effect in the past.

    time for Autohempinfusion maybe...

    Christchurch • Since Dec 2006 • 7953 posts Report Reply

  • Sacha,

    Fish oil is another useful anti-inflammatory

    Ak • Since May 2008 • 19743 posts Report Reply

  • Islander,

    Sacha -indeedy. Good for pretty well everything, from sustaining yer eyes & brain, to making sure your arthritic feet stay more or less straight...

    there are fish-oils & fishoils however: it pays to do a wee bit of research. Meantime, I just eat the locally caught salmon, and the tribal titi (and take 4 capsules a day...)

    Ian D - heh! I'll put the plaque somewhere up there in acknowledgment-

    D3 is a really interesting one: I'm less SADdened after a couple of years
    of taking it. Unfortunately, it is counter-productive for people taking prednisone (as several of my family do.) And - getting it naturally? There are a number of gingas in the family, and while I'm normally - well, grey now! - I avoid high sunlight because it affects my skin adversely. Choices, choices-

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Megan Wegan,

    You guys, I have nothing to say (i KNOW!), except that as someone who has no experience of any of this, I wish you all love and health.

    Welly • Since Jul 2008 • 1275 posts Report Reply

  • Russell Brown,

    Sorry if this comment is a bit long. I'm glad to have a forum in which to post this!

    Don't fret. What you wrote was compelling. I suspect Emma's feeling good about making the decision to share her experience.

    Auckland • Since Nov 2006 • 22849 posts Report Reply

  • Julie Fairey,

    As others have mentioned, I found getting a doctor who would make the diagnosis absolutely pivotal. At the time I started to get ill I was a student and had no GP. I was reliant on Student Health, where the doctors were variable, and I seemed to always, randomly, get this same woman who just thought I was lying about lots of stuff (like that I didn't drink, wasn't taking any drugs and was rather unlikely to be pregnant - sending me for tests for stuff that I was quite clear it was not possible for me to have, just not telling me that's what the tests were for, nice).

    My mother-in-law recommended a woman doctor that she knew who turned out to be fantastic. She is still my GP now, a decade later, and even though I have to travel a bit to see her I will keep her for as long as I can because she knows what I've been through and she gets it. At my first visit with her she diagnosed depression and/or CFS. She was quite upfront about not knowing much about CFS, but she had a leaflet on it, which she gave me, and referred me straight to Rosamunde Vallings (iirc), who happened to be at a practice close by and was one of the NZ experts. That got me on the right path at an early stage.

    While the internet was v helpful for contact with friends and feeling generally useful, it was a minefield of misinformation about CFS which I quickly gave up on. I stopped reading books about CFS (and depression) too because I would find once I'd read about a symptom I wasn't having I would often start getting it. I was terrified by the general information I saw several different places that I would lose my fingerprints. Somehow this just went to the core of me, it seemed such a loss of identity and self. After that I stopped reading stuff.

    Like Lilith I found supplements, recommended by a chiropractor of all people, helpful. Co Q10 was one of the ones she put me on, which was a difficulty at $50 a bottle. I laugh now when I see it in an advert for face cream.

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report Reply

  • Bart Janssen,

    It's great to hear you and others talk about your experiences. You call it whining but it is not, it's just talking about stuff that is happening to you and there is nothing wrong with that. And from the responses obviously plenty things right with that.

    Who are, so far here, exclusively female. Is there some science on that?

    I doubt it. As Emma said it's more likely to be a reporting bias. I know a guy who got CFS after a dose of glandular fever. His experience was very similar to Emma's. It's likely that men for whatever reason don't report and self medicate (alcohol) or just carry on working when they feel like crap because they believe there is no other choice. There isn't a lot of science around CFS because it's so damn hard to study, very few patients are exactly the same for starters.

    As for causes, some kind of immune system stress seems to be very common. General stress is known to reduce the immune system function and hence more likely to allow viruses to infect so a relationship between stress and CFS is strong. But that is true of almost any health issue, stress is just plain bad.

    One thing that folks don't realise is that most of the crap feeling you have from a cold is as a result of your own body changing biology. It seems that one of the basic ways of beating a bug is to make the environment non-optimal for the bug. Your body can handle the non-optimal conditions better than the bug and so the bug dies. This is in addition to the really cool specific defenses like antibodies and the T-cell B-cell system.

    The most dramatic demonstration of this came when we discovered interferon. Interferon is an immune response factor that comes up in response to infections, particularly viral infections. It was reasoned that if you gave interferon boosters maybe you would get over a viral infection faster. What they found was that when they gave interferon to healthy folks they developed most of the symptoms of having a cold, feeling crap, fever, aches etc.

    It seems that most of the reason you feel crap when you are sick is a normal response of the body to make life difficult for whatever is infecting you.

    What seems to be happening in CFS patients is that they feel crap without any infection. It is common for it to have been triggered by an infection but so far nobody has found any consistent virus or bacteria. So the best guess is that CFS is the body changing it's own conditions to make life difficult for a non-existent infection.

    Anything that resets the system could break the CFS, which explains the effect of pregnancy which plays merry havoc with the immune system. Even a second viral infection could do it, although that should not be considered advice to hang out with sick kids. It's worth noting that a lot of viral infections are sub-clinical, that is you never even know you've been infected. So you may never know that a second virus triggered your (slow) recovery from CFS.

    Lots of other things like depression, weight loss, muscle wasting, even vitamin D deficiency (who wants to go out in the sun when you feel sick) are likely to be secondary effects, but that's not certain either. But sometimes treating the secondary effects does as much good as anything. Most CFS sufferers seem to get better with time as well, some of that is developing coping mechanisms but some of it is a real improvement over long time frames.

    I'm not sure I've heard anything convincing about brain injury being involved. Most of what I've heard and read (note not my field of expertise) suggest that brain function is not permanently affected and even during CFS brain function is good when the patient (victim) is having a good day.

    Whatever the cause or cure, CFS isn't fun for those who have it and sharing your experiences is not a bad thing to do.

    Auckland • Since Nov 2006 • 4460 posts Report Reply

  • Ian MacKay,

    In the early 80s my wife chose myalgic encephalomyelitis as her research topic. She approached many authorites on what was usually called Tapanui flu, but in the 80s it was not generally recognised as being a real condition. The symptoms were wide ranging and variable. Treatment was patchy. For instance a common suggestion was that exercise would hasten relapse. Reading all the contributions here show just how much progress has been made in 28 years or so. The internet did not exist then and it is interesting to read of the important part it has played for many now.
    A Community of Interest?

    Bleheim • Since Nov 2006 • 498 posts Report Reply

  • Ngaire BookieMonster,

    Oh man. Reading this has brought back the feeling, the fear... the everything.
    But it's also been really cathartic. What Julie has said is particularly resonating with me - it sounds like our experiences of how it felt are very similar - plus I also saw Dr Vallings.

    I'm lucky. I get to say I'm over it now. There are probably three reasons for this - my family who saw me every day and lived with it with me for 4+ years and just let me deal with it and never for one moment questioned that I had an illness, my GP who saw that I was going very downhill and after 6 months told me I had to go and see Dr Vallings because I wasn't well, I had to accept I wasn't well and I wasn't going to just get better one day and I needed to do something about it, and Dr Vallings - one of the very first things she said to me was "You're young and your chances of getting better and getting rid of it are very, very good, and here's how we are going to help that happen." It was like she knew exactly what I needed to hear, what my biggest fear was at that point. I was so lucky.

    And now it's 12 years later and I'm normal. Well, I'm not normal like I was before I got CFS (because who could be?) but I'm as normal as I can be. I get a cold and it's just a cold, I have a weird blood test result and it's a weird blood test result but I don't have physical symptoms, I can cope with large amounts of stress and I can make it through if I've had a bad night's sleep. Finally, after 11 years, I no longer have to take low dose medication to get a sleep that feels like I've slept.

    And, most of the time, I don't even think about it anymore. Which was a huge step. Like any major trauma or illness it's like a ghost that haunts you, because you think it might come back as quickly as it started (which for me was literally overnight), but time gradually passes and the ghost starts fading and then one day you realise you don't see it anymore.

    At the foot of Mt Te Aroh… • Since Nov 2009 • 174 posts Report Reply

  • Andrew Stevenson,

    Thanks Emma, and the others who have contributed their stories. It helps in understanding a bit of my own experiences - in both the receiving and giving of support.

    Wellington • Since Nov 2006 • 206 posts Report Reply

  • Emma Hart,

    Don't fret. What you wrote was compelling. I suspect Emma's feeling good about making the decision to share her experience.

    Indeedy. And the emails and messages keep coming in from people who just want to talk in private. It's pretty great.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Julie Fairey,

    Also I should have said when I mentioned losing fingerprints that it is totally untrue and you do NOT lose your fingerprints. Sorry, hope I didn't freak anyone out the way I freaked out when I read it all those years ago.

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report Reply

  • Joanna,

    Also I should have said when I mentioned losing fingerprints that it is totally untrue and you do NOT lose your fingerprints

    Dammit, there goes my idea for a TV pilot called CSI: CFS where they can hardly ever figure out who commited the crime, but when they do, it's really easy to catch the perps because they're in bed.

    Wellington • Since Nov 2006 • 746 posts Report Reply

  • Ian Dalziel,

    Dammit, there goes my idea for a TV pilot called CSI: CFS

    still hope for the pilot of:
    It's all about ME
    (The Chronic Ills of Tapanui)

    :- )

    I'm not wishing to make light of this condition,
    but I'd always hoped the alleged meteor strike above Tapanui in the 1500s hadn't been so effectively dismissed – aided by a notable of this virtual parish no less ;- ) – I'd had this fantasy about a Colour out of Space -type origin for "Tapanui Flu"...

    Christchurch • Since Dec 2006 • 7953 posts Report Reply

  • Islander,

    Ian - heh!
    While he was a leeetle obsessed with 'the meteor', Peter Snow was a fine GP, and much appreciated by the people he served. And he did bring 'Tapanui flu' to national attention.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Steve Barnes,

    I was totally ignorant of all this, it's like a bolt from the blue as it were.
    I thought it was normal to feel like shit all the time, the human condition or something, damn.
    I contracted Glandular fever in my mid to late teens, the doctors told me I would be lucky to reach the ripe old age of 21, they were either wrong or this is all a dream, sometimes it's hard to tell and, to be honest, hard to care. Thank you Emma and thank you all, I am in tears now and I'm not sure why.

    Also, my WINZ designated doctor didn't 'believe' in CFS.

    I believe it's part of the selection process that they think all sickness is malingering.

    Peria • Since Dec 2006 • 5521 posts Report Reply

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