Blind Alleys

I’ve been ill with M.E. for a long time.  A very long time.  And I have to be honest and say that nothing much about the disease either excites or surprises me these days.   That’s because I’ve heard it all before and there is nothing you can tell me about M.E. that I don’t already know.

The past few years have felt quite exciting for the M.E. community and I know there is much hope about Jen Brea’s upcoming film, Julie Rehmeyer’s soon-to-be-released book Through The Shadowlands, the current research into Rutuximab, the recent American study on the disease burden of ME and how much should be being spent on research, and various studies on how the way we produce energy is faulty.  But while all these might seem new to most people they’re old hat to me.

I got excited in 1996 when Hilary Johnson wrote an expose book called Osler’s Web.  We in the UK got very excited in the late 1990s when one of our most well known TV personality’s daughters contracted very severe M.E. and her Mum did an entire hour long documentary on the disease on TV.  I got excited in 2003 when a study suggested M.E. costs the UK a staggering £2.2 billion and our Government allocated £8.5 million to set up specialist clinics around the country (from which funding has since largely been pulled and which, in any event, were bloody useless as they focused almost exclusively on CBT and mindfulness with no help for the actual disease in any way and very few outreach resources for the severely affected).  I got excited in 2011 about the release of the book (in which I took part) and subsequent film Voices From The Shadows about life with severe M.E.  And I’ve lost count of the research studies about which I’ve been excited over the years, nearly every one of which claimed to have finally found the cause of the disease.

Here is, IMHO, the hard truth about M.E.: until a cause for the disease is found, and a test to prove whether someone has M.E. or not is developed, nothing will change.  And we are sadly nowhere near to discovering either.  Nowhere near.

For over a decade the research focus was on a single virus or bacteria being the cause of M.E. – Epstein Barr, Herpes, Enteroviruses, XMRV.  I never understood the logic.  While most cases of M.E. start with a viral infection, the virus is different for all of us – mine started with a tummy bug, yours might have started with the flu, Slap Cheek caught off your child, or any number of other infections.  It may not have started with a viral infection at all – some cases of M.E. start following surgery, or a car accident, or after a vaccination.  The only common factor is immune system activation.

Now the focus is firmly on energy, which is another blind alley.  When we get the Flu, or Glandular Fever, our energy levels are next to zero and just walking to the loo or digesting a bowl of soup is all we can manage for weeks, sometimes months.  But there’s nothing fundamentally wrong with the way our body produces energy.  This lack of oomph is part of our immune response.  If I over-do it, either mentally or physically, my throat gets sore, I feel fluey and I overheat.  This has nothing to do with energy per se or the lack thereof, it has to do with my faulty immune system.  So all this research on hibernating animals, or inability to convert glucose into energy, doesn’t in any way explain my symptoms.  This is what happens when CFS is mixed up with M.E.

The roots of M.E. seem so blatantly obvious to me I have no idea why researchers continue down these dead ends instead of looking at the immune system as a whole.  Instead of looking at mast cell activation dare I say it, or some other event which affects our entire immune system.  Researchers would do better to study patients with the flu than patients with CFS.

It may sound like I’m jaded over the whole M.E. thing and in many ways I am, but I don’t mean to sound negative.  I am absolutely 100% convinced that a cause for M.E. will be found and while a cure may not be found (we still can’t cure the common cold remember!) at least we may discover drugs which alleviate symptoms and lead to increased quality of life.  I sadly just don’t think it will happen any time soon.

 

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12 thoughts on “Blind Alleys

  1. Livvy Woodburn

    Hi Jak,
    I love your blog like many others do too.. I just thinking aft I read this post… you know how the experience of illness, esp rare/invisible/chronic/neglected illness, causes us to be a bit more reflective in life & changes perspectives a bit compared to when your well.. I had no idea of this chronically sick world when I was well & it is hidden from mainstream.. all that is shared or discussed is brilliant but the public never read it & have no concept of it. I’m not sure wether they would be interested or not? I just read your blog sometimes like today & wish it was mainstream & printed as a weekly national magazine article or something like that.. probably the last thing you want!! But do you know what I’m saying? How if it’s just us sickys reading it how can we change opinions & judgements? I realise this is not why you write your blog & im just expressing my frustration really that your post made me feel very strongly about the lack of fundamental understanding of the true loved experience of ME even in research circles let alone GPS, social workers, nurses & carers & wider public. It seems to me that one of documentaries that absolutely amazing things to achieve and put together when suffering from ME, are watched & then forgotten about and I would love for something like the new films / books coming out to start a weekly / monthly narrative about chronic illness to be kept in the public remain so we are not forgotten about once again. After all that, thank you as ever for your wonderful blog, I love it & many hugs for achieving it weekly xxxxx

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    1. Jak Post author

      Thanks for the comment Livvy – I know exactly what you mean and where you’re coming from. The world of chronic illness is very much hidden from public view – to me it feels like some kind of parallel universe! And when you’re chronically ill you do change your perspective on life, which is actually a good thing.

      The reason I sometimes come across as jaded about the ‘chronic illness world’ is that I’ve been ill so long I know the realities. I’ve lost the youthful optimism shown by people in the first few years they get ill and am realistic about what can and can’t be achieved. When first ill I tried to publicise the disease and took part in all sorts of studies and research initiatives, which all came to nothing. The sad fact is healthy people don’t want to know about us. And when I was healthy I wouldn’t have wanted to know either. It’s scary to think there are millions of suffering people out there who have no control over their lives and it’s something healthy people, for the most part, don’t want to take on board – they’re just glad it’s not happening to them.

      It’s like the situation in Syria or the Congo. Wars that go on for years, suffering that’s impossible to imagine, yet the world watches for 10 seconds on the evening news, sighs with angst, then carries on eating their dinner. Literally a handful of people care enough to actually become involved.

      Lots of my friends rant on Facebook about the state of the chronically ill and I say over and over again they’re wasting their precious energy. Like you say, other sick people already know and healthy people don’t actually care 😦

      We need people like Ron Davis who has a personal interest through his son Witney Defoe – they are the doctors who will find the answers to ME.

      Jak x

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  2. Ricky Buchanan

    I love this blog post so much! The other day I tripped over something I’d written in about 1995 saying how stupid it was we all argued about the name of ME/CFS and I wished everybody would all just stop doing that. Twenty two years later and nothing’s any different in so many ways … except I’m way more jaded about things too. Thanks for articulating this so well 🙂

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  3. Karen, The Walking Allergy

    I had a singing angel moment yesterday!!! Exactly this topic. I started a group for people with complex chronic illnesses. To be eligible, you have to fit the criteria for CFS/Fibromyalgia or ‘Chronic Lyme like syndrome(Don’t ask…). I saw the head of it in November, and I really thought that he ‘gets’ it.

    He was using a ‘pinning’ strategy- you go around the room, introducing yourselves, the presenter takes something you say expands on it, connects that concept to that person.

    we get to me…I say MCAS, he explains what it is. He says (hold onto your chair). “This is likely to be new information for most of you. While some, like Karen, have mast cell symptoms as the most ‘obvious’ or ‘notable’ symptom, I wouldn’t be surprised if everyone in this room has inappropriate mast cell activation as part of their clinical picture.” (Can you hear the angels sing?…..). Talked about mast cells and IBS, food sensitivities, skin sensitivity…. He uses ‘Central Sensitization Syndrome’ to describe the cluster. When I first saw him, I said that the sensitization was the messed up messages, the mast cells are what carry out the wrong orders…. and he said it yesterday, integrated into his clinical picture. I made it through an hour before I had to leave, I don’t think he said anything that I disagreed with…. how weird is that!!!

    The funniest thing is that the things he starts with are pacing and mindfulness. He said that there had initially been hesitancy from some patient groups, because they had all been down the ‘it’s all in your head’ road. The first task, apparently, is to disabuse us of the modern notion of ‘pushing through’. He said it makes his back go up almost as much as ‘no pain, no gain’. Our bodies need different things, and the only way to determine that is to listen to what it’s saying. Spot on. He believes that CBT has a place, especially for those who have experienced trauma, but also to deal with grief and loss that comes with having to change your life. He also firmly believes in looking at the medical side of things- is there a symptom that we could target that would improventhings, and functional medicine- identifying nutritional and metabolic stuff that has gone so far off because of the illness, and need help to get back in balance. He talked about cellular fatigue, that the mitochondria have a harder time replenishing in people with CFS.. He said that before, too- must look into that…

    The ONLY universal message that I hear from medical professionals , para professionals, patients, etc etc., is ‘listen to your body. Do what it is telling you to do.’ We train that out of our kids from the start! My mother didn’t….which is why I can have a ridiculously severe case of MCAS but not the organ damage to match. And I suspect why my knee joint still looks like a knee joint, and my ‘push through, it’s only pain’ sister’s doesn’t. I dislocated my patella when she and I were skiing at Whistler. I got it back in relatively easily, she wanted to keep skiing…she said ‘come on, it’s only pain! It’ll be fine.” She’s 5 1/2 years older than me. Oh boy, saying ‘Nope. My kneecap was just on the side of my knee instead of the front. It doesn’t hurt that much, but I know, that while this seems normal to us…I don’t think it is….’ was SOOO hard. But I did. Fortunately we get along well enough that when the say ‘Did you know that……’ I can answer ‘Yes. Ten years ago. Your little sister ain’t so dumb after all, eh? I told you so….’ and laugh. Maybe not this week….but usually!
    Karen

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    1. Jak Post author

      Fabulous you’ve finally found someone who ‘gets it’ Karen 🙂 It’s such a relief isn’t it?! I’ve nothing against pacing and mindfulness as management techniques (and use both every day) but here in the UK that’s all that’s on offer (alongside a bit of useless physio that most people with ME can’t do). I’m sure pacing and mindfulness are useful in managing the symptoms of cancer or heart disease, but you’d still want to see an oncologist or heart specialist and have some actual treatment for your disease too. And I have to be honest that when you’re severely ill, bedridden and just opening your eyelids or eating is beyond you pacing is irrelevant (at least in my experience) – these kind of management techniques are more relevant for people who are much more functional. So I guess it all depends where you are on the disease spectrum.

      I’m not sure about the pushing through aspect if I’m honest. Out of all my friends with very long term severe ME I’m the only one who has really made any degree of recovery. I don’t know why, but all my friends went back to live with parents and were looked after – they had the luxury of staying in bed and doing absolutely nothing. I didn’t because I lived alone and was refused social care. So if I wanted to survive I had to get up and make a meal or have a bath no matter how ill it made me feel. I don’t know if that contributed to my partial recovery or not, but it’s something I think about. Pushing through pain or dislocations however is stupid and will definitely make recovery impossible. Jak x

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      1. Karen, The Walking Allergy

        I think u an I agree, semantics is always tricky.. I think that in our family, “pushing through” meant ‘ignore what your body is telling you’. I once blacked out while portaging a canoe… I’d known for a good 15 minutes that it was going to happen if I didn’t get the canoe off my shoulders (OMG! I just realized why those damned yokes make me pass out- but not other people!!!!! The downward pressure on my shoulders and neck… I bet it was pinching all sorts of blood vessels and nerves.). Looking back, I very much thought ‘the other kids can do it, so I should be able to’. The counsellor was walking with me (they are ‘supposed’ to spot you, so if you have to take the canoe off or shift it you don’t actually have to put it down, they stand under the front and tip it up). She said that it was only a bit farther, everybody else was finished, but my very dear friend heard me say “You don’t get it! I CANT! You have to take the canoe! I am going to pass out!!” and caught the canoe as I crumpled. It is a bit stunning to have an answer to the question “Other kids can do it, how come you can’t?”. “Because there is very little actually holding my bones together.”

        The other stuff I call ‘determination and grit’- qualities that you have in spades!! That’s the ability to never stop trying to find solutions, not accepting what someone else tells you if your body says differently. When you hit a brick wall, you don’t splat against it like silly putty. You look at that wall, and you keep trying different ways to deal with it. Around, under, over. And if that all fails, you turn it into a ‘feature’, or grow sweet peas up it.

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        1. Jak Post author

          Love that last sentence 🙂 It’s weird that my diseases need totally different treatments. The way I manage my M.E. is very different to how I manage my EDS. Pushing through when I had severe ME simply wasn’t possible – I could end up having a seizure. But I push through the “fatigue” of my EDS most days without too much consequence. Pushing on when I’m in pain is an absolute disaster and ends up, like you experienced above, in my body just giving way which can cause very serious injuries. It’s such a complicated life we lead and a very finely balanced dance x

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      2. Karen, The Walking Allergy

        Oh- and the doc running the group said that almost everyone there was at a similar level of function- 3-5 hours a day of ‘functional’ time. More, and they’re too busy, less, they can’t possibly make it… Saw doc yesterday for an appointment. He said that if I can’t come to the group without paying for it for days, don’t come! We have LOTS of medical stuff to work on, and if that needs to happen before I go to the group, so be it. If the group is just too smelly, it may not be the right thing for me, ever. The medical stuff is individualized, (tho the waitlist of two years for the full work-up is utterly nuts. Just as you said, I can’t imagine a patient with severe cardiac disease or cancer has to wait two years to get tests done…) I think he actually gets it..he said that regardless of where a vicious cycle starts, the best way to interrupt it is to come at it from several directions at once, and then you have a hope of actually identifying the underlying causes, and how to avoid it next time. I keep looking around corners to see if there’s somebody ready to jump out and say “Ha ha! Joke’s on you!” It’s distinctly surreal…

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    2. Jak Post author

      Karen, this discussion on ‘pacing’ has prompted my latest blog post. I’ve linked to your blog (hope that was OK, will remove the link if not) but I couldn’t get any of the pages on the Menu to load – just got an Error 404 page not found message. The 2 blog posts loaded fine but nothing else. Just thought I’d give you the heads up in case there’s a problem. Jak x

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      1. Karen, The Walking Allergy

        Sorry Jak! Kinda set up that way… they will likely soon be down- as I shift and write new posts aimed at a broader audience. I had intended to do a full ‘spill’ about what I have discovered with respect to my denial of care that I have not yet put in my blog, and make several posts public. I was actually almost ready last fall. In my quest for answers (when something doesn’t make sense, I can’t stand it…), I found more information than I wanted to. Sometimes, seeing things that others don’t see has it’s disadvantages… What I have discovered has changed what information I feel able to share. My (sometimes inconveniently loud) conscience is telling me one thing. At some stage, probably sooner than later, I will have to have have a conversation with our fine Mounties… I discovered something this fall, and it has sent me into a completely surreal place. But this is no nightmare, it’s real. I now have documented proof that some of the things that happened to me were intentional; And the ‘big picture’ is bigger and scarier than I had ever considered.

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  4. d

    Hi Jak

    I agree with your comment above about pushing through. To a point you have to listen to your body and make sure you get enough rest, which is very likely a lot more than the average person, but when your body is constantly telling you you should rest, some moving around is important. I remember a particularly bad episode that left me feeling so exhausted I didn’t think I could move. A friend who has experience with people with chronic illness said not moving at all clearly wasn’t helping so I should try getting up and moving. I did and although I wasn’t moving fast or doing much beyond walking around my kitchen, I did start to feel better. That was my light bulb moment for exercise. I slowly started exercising – first around the block, then farther afield until I could walk for about an hour. It took a while to get there but it’s part of my maintenance plan and when I don’t do it regularly I feel it in my body. There is something about it that someone with more expertise could probably define but I would describe it as a way to help clear the excess mast cell build up. My two main goals every day are to get some exercise and to make time to rest – those two things, opposites on the spectrum of activity, are extremely important in managing my symptoms and ensuring some quality of life.

    d

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    1. Jak Post author

      Couldn’t have put it better myself d. Even though I experience some symptoms from my daily walk with the dog, if I don’t do it I actually feel worse ME-wise. However, at the moment I’m having a huge EDS pain flare up and I know the only cure for that for me is total rest. My body has diametrically opposing needs at times! xx

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