Out of the Blue

Well, I seem to have gone into PEM at the moment – due to too much blogging amongst other things. Fortunately I have a post for ME Awareness Month which I prepared earlier. In it, I have tried to describe how it can feel to be suddenly stricken down with this devastating condition. Please take a few minutes to read it, especially if you know very little about ME. It is not an easy illness to understand unless you have it yourself or are close to someone who does – and even then it can be bewildering. I have tried to open a small window on the experience of trying to adjust to this unwelcome visitor. (And if you’ve been wondering what PEM is, you’re about to find out…)

One day you start feeling ill. You don’t think very much about it at first. It’s just a bug and bugs go away, don’t they? But at the end of a week you’re not feeling any better. You wonder how long this is going to take. You’re getting a bit alarmed.

At the end of a fortnight, you’re positively worried. You have to phone work yet again to tell them you’re still not well. There’s a growing pressure to explain yourself but you’re just as baffled as everyone else. Your body’s supposed to repair itself, so why’s it not happening?

You also have to explain yourself to your family. They want to know when you’ll be well again. There are things to do that you can’t put on hold forever. Could you give them some idea of when you’ll be up to speed again? This illness of yours is getting inconvenient.

So you go to the doctor, hoping that he will know, but he doesn’t seem to have any more idea than you do. He gives you a sick note but even that seems grudging. Even he seems to think you ought to be fixing yourself by now. But isn’t that his job?

You try to start doing more – but the more you do, the worse you feel. You’re weak and in pain and something feels poisoned inside you. You’re starting to think that something is seriously wrong.

So you go back to the doctor’s again and this time he runs some blood tests. At last you feel you’ll soon be getting some answers.

But this turns out to be a very big disappointment.

“You’ll be pleased to know the blood tests are all OK,” the doctor tells you. But you don’t feel pleased at all. You’d been hoping he’d find something wrong so he’d know what to fix.

He can’t understand why you start to get upset.

“Aren’t you happy to know there’s nothing wrong with you?” he says. “Perhaps you should try some anti-depressants? Your mood seems rather low. Or if you don’t want drugs, there’s CBT or mindfulness.”

There’s all sorts of things you can try – but you still feel ill.

Now the doctor says you might have ‘chronic fatigue syndrome’. But it doesn’t feel like fatigue – it feels like exhaustion. Not only that, there are other symptoms as well: you’ve a sore throat, and pain in your muscles and joints. You can’t think straight a lot of the time and you keep forgetting your words. You wake up feeling more tired than you did when you went to bed.

The doctor says you’ll be better in time but you feel like you’re getting worse. He also says to avoid stress, but work want to know when you’re coming back which is stressful in itself. How much of this before you lose your job?

Your friends have been phoning to ask how you are but as time goes on, the calls get less and less frequent. Most of them don’t know what to say any more, and the ones who still phone make annoying suggestions about what you can do to get better. Have you tried swimming? Have you tried breathing? Have you tried vitamin pills? You’ve already tried a lot of things but you still feel ill.

Your family have suggestions too because they’re getting as desperate as you are. After all, it’s been months now. One of them has read an article that says what’s keeping you ill is your fear of exercise. You protest that you’ve tried doing more and it made you feel worse, but they say that is just a belief you have that is keeping you ill. You feel you’re letting them down so you feel obliged to do what they say. You start doing more each day and you push through the pain till your muscles are crying out in protest. No pain, no gain you tell yourself. You push on every day until you can hardly get out of bed. You end up collapsed on the floor. You just can’t do this any more. You lie in bed in utter exhaustion, your muscles all on fire. The light is too bright and everything is too loud. This was a nightmare before but now it is worse than ever. You lie there for many days resting, wondering what’s going to happen next.

Then one day you’re well enough to sit up in bed and use your laptop. You find a site about ‘chronic fatigue syndrome’. Apparently it’s also called ‘myalgic encephalomyelitis’ (ME), which means painful muscles and inflamed brain and spinal cord. It is a neurological condition and the cardinal symptom is post-exertional malaise (PEM), which means that the symptoms get worse in response to too much exercise. It is therefore important to stay within the limits of your energy. Research has shown that people with ME uniquely perform worse on the second day of exercise and produce many times the normal amount of lactic acid in their muscles, so providing proof of PEM. The recent influential IOM and P2P reports from America concluded that this is a ‘serious, complex, chronic, systemic disease’ which does not have a psychiatric causation, so it isn’t just some silly ‘belief’ that’s keeping you ill.

You wonder why your doctor didn’t tell you any of this. You wonder why that article you read in the paper said to exercise more when that was clearly the worst thing you could have done.

You read a bit more on the website. Apparently a research study called the PACE Trial claimed that graded exercise therapy was helpful for ME, but this referred to a carefully graded programme of exercise, not just doing more as suggested in the newspaper. On top of which,  in depth studies by journalist David Tuller and Rebecca Goldin of Sense about Statistics USA have produced persuasive evidence that the PACE Trial is fatally flawed in numerous ways, and over forty eminent researchers and clinicians in the field of ME/CFS have written to ask for an independent review of the study. Apparently the US P2P report found that even the Oxford diagnostic criteria which were used to select patients for the trial ‘impaired progress’ and should be ‘retired’. Furthermore, a patient survey by the ME Association  found that 74% of patients were made worse by graded exercise therapy.

After ten minutes reading, you are utterly exhausted again. You can no longer stand the glare of the screen or the pain and exhaustion of sitting upright. You wish you had found that site before but you can’t read any more of it now. You turn off the laptop and lie down and close your eyes. You are still in terrible pain and drained of strength. An hour later, you still don’t feel any better.  You wonder how long this nightmare will last and what will become of your life. You wonder why no one told you this could happen to you.

 

An estimated  250,000 people in Britain have ME. If you find yourself in what seems to be a protracted post-viral state, please go to your doctor. You may be lucky and find one who knows something about ME and in any case you should be checked for other conditions. If you are in the UK, he or she may be able to refer you on to a specialist clinic, though these vary in their approach to ME and some of them use graded exercise therapy. The NICE Guidelines will give an idea of your entitlements under the NHS. It is a good idea to also inform yourself as much as you can by studying the information which is available on the internet, though – as you might imagine – this varies in quality. The ME Association website is an excellent place to start. Tymes Trust is a good site for young people. If there is a local patient support group, they should be able to give you some information about what services, if any, are available locally.

If there’s anything else in particular about ME you would like to know, please leave a note in the comments. As you’ve no doubt guessed, I’m not medically trained, but I’ll do my best to point you in the right direction.

Unfortunately a great many people with ME never recover from their condition. Around 25% become permanently housebound or even bedbound. Most of these are left without any medical help. There is a desperate need for more biomedical research to help understand and properly treat this condition. If you would like to help people with ME, please listen to what they tell you about their condition, and consider making a donation to ME Research UK or the ME Association.

Many other patients have also done blogs to raise ME awareness today. You can find links to them here from 11am on 12th May. Thank you for reading.

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10 thoughts on “Out of the Blue

  1. Can’t ‘like’ this as I’m sad to hear you hit a wall after using your spoons to support others. But, as ever, it’s a great piece and I know it will help people understand ME more clearly. Sending spoons …

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    1. Thanks, Polly, especially for the spoons! I had a couple of terrible days but I *think* I’m pulling out of it again. That’s the trouble when you get an ME downturn. You don’t know whether it’s going to last a few days or the rest of your life. That sounds ridiculous/alarmist but unfortunately it’s the truth. Usually it’s a few days or weeks but – to give an example – I had a downturn in 1995 after which I have never fully recovered the use of my eyes. Obviously I am seeing to write this OK but I would like to read more of the ME Awareness blog posts that others have written yet I had to give up after one. I hope to be able to read another one this afternoon. Everything has to be done in bits with rests in between. It’s very frustrating.

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  2. An excellent explanation of our trip from Day 1 to whatever our present day situation is. Mine is having just had a PIP reassessment where my GP submitted a supporting letter to say that ‘they do not currently have any different treatment strategies to try and it’s unlikely my symptoms are going to improve significantly in the foreseeable future’. This so well written and gives such an accurate account of the ME Timeline that I’ll be passing this onto my local MP’s as a template of the situation we are in.

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    1. Many thanks, Bill. Yes, I envisaged this as a kind of “everyperson’s” journey into life with ME so I’m glad you think I’ve succeeded in that. If only the experience were different… Let’s hope it will be someday soon. Well done in your own efforts to raise awareness locally.

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  3. Thank you so much for this, Mr Spoonseeker. It’s such a comprehensive account of an oh-so-familiar situation. I appreciate the relevant links, too.
    I hope you can seriously rest up now and at least get to your pre-blog level…

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    1. Many thanks for the positive feedback! Fortunately I seem to be coming out of the PEM OK but it can be scary when it happens, can’t it? We always need to remember to prioritise pacing. I allowed myself to get too enthusiastic about the writing I was doing. It’s brought it home to me that enthusiasm is a dangerous thing when you have ME!

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  4. Really sorry to hear you’ve hit a relapse – I sympathise entirely as I’ve been in one for nearly 4 months now, and, like you, have absolutely no idea what triggered it! Anyway, thank you for your excellent blog, I’m a regular reader and think you write beautifully. I hope you start to feel better soon and that this is just a minor blip and not a major bump in your ME journey. All the best 🙂
    Bluesky

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    1. Many thanks for your kind words. As I’ve mentioned in my other comments, I seem to be on the mend again, though my shoulders are not what they were. I need to dust off the voice activation software again – I find it frustrating to use but sometimes it’s the only way I can use the computer.

      Yes, it’s always especially frustrating when you have a relapse and you don’t know why. My theory is that when that happens, it’s usually because you’ve got an infection. I no longer seem to go down with the usual symptoms of colds etc. What happens instead is that my ME gets worse. It’s particularly puzzling until you work out what’s going on.

      I hope you start feeling better soon!

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      1. Thank you! And I’m exactly the same, I’ve had one cold in 6 years, which, given I have three kids, is a minor miracle. But I’ve had nothing else, and, like you, I just seem to get an exacerbation of my ME symptoms. I think we’re a subset; there seems to be a majority who get everything going and get symptoms of whatever it is they’ve come down with, and then there’s the minority like us, who seem to get nothing but relapse with ME symptoms instead. Such a strange illness we have!

        Anyway, thank you for your reply and your best wishes, I’m really glad you’re on the mend from your “blip” 🙂

        Liked by 1 person

  5. Thanks. It’s interesting: I agree with you about subsets but the impression I have is that those of us who don’t get colds etc and just experience our ME symptoms getting worse are in the majority. It’s something I’ve often discussed informally with people but have never seen any ‘official’ figures – it would be interesting to see it addressed in a patient survey sometime.

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