14. Start Here - Newly Diagnosed With ME

What I think are the most useful things that I wish I had known when I was first ill with ME.


Hello! In my other videos so far on Get Well From ME, I’ve tried to explain quite a lot about what ME is - as far as we know about it. There isn’t a cure, yet. But in my last video in the series, number 13, I have talked about various treatments which can help some people, and I’ve just outlined a pretty big list of possible approaches. Please don’t be overwhelmed by that! If you have recently been diagnosed with ME, or Chronic Fatigue Syndrome, or with Post Viral Fatigue - they’re NOT necessarily all the same thing as each other - or if you’re still waiting for a diagnosis at the moment, - then don’t use up your precious energy now chasing around for the right treatment or magic cure. I will be going into more detail about those possible treatments soon, so you can decide whether you think you might benefit from trying any of them. But here are the most useful things that I wish I had known when I was first ill. Getting ME diagnosed and managing it right as early as possible, is shown to make such a difference to how well people can often recover, and how quickly. But, it is NOT a race. And some people do get worse, or are not recovering, or fluctuate between relapse and remission.

I also really recommend reading a recent blog by “No Poster Girl”, for people who are newly diagnosed.

1. Rest. Firstly, the most important thing, by a long long way, is rest! Lots of good rest. Now, that doesn’t mean that you’re giving up or not trying to get well. ME is a serious illness. And rest is a positive treatment, you need to give your whole body the best chance to heal. And whether your immune system is still fighting infection, or whether your body has been overcome by toxic loads, or whether your body’s physical stress response systems have been stretched way beyond any normal limits, or whether for whatever reasons your metabolism and heart rate and hormones and brain have all been pushed out of control by the physical processes of ME - then, instead of using up all of your very limited energy doing all the things you want to push yourself to do, as if you were not ill, instead you have got to rest, and save as much of that energy as possible for the body to use in repairing itself, - so it can deal with infections and other loads, and so it can balance all the states of equilibrium that have been totally thrown off balance. This might be against what you’ve always done before, if you’ve always pushed yourself on when you’re ill. It might be against well intentioned advice from other people, even from some doctors who don’t understand ME. But the old saying that “If there’s no pain, then there’s no gain” is definitely NOT true with ME. I have never met or heard of anyone getting well from ME just by pushing themselves. With ME it’s like the whole body’s battery doesn’t work properly - it only has the capacity to charge up a little bit, takes far longer than normal to recharge just to that level, and then it gets used up really quickly with just the tiniest bit of activity. And if you keep trying to use up a rechargeable battery while it’s running on empty, then it just makes it worse and worse. So don’t keep draining your battery to empty, or to even less than empty! Give it all the chance you can to repair itself, by resting, and hopefully over time, with recovery, your body’s battery will get bigger again, and recharge faster, and get used up at a more normal speed. One Chronic Fatigue Syndrome doctor, David Smith, has said - and I’m not sure if it’s scientific, but it makes a good general point - that for every one day you push yourself too hard to the point of exhaustion and sickness and have to recover afterwards, then you are actually putting one more day onto the end of the illness, at least, - and if you have been ill a long time, then you could be adding on several days to the end of the illness for each day you seriously overdo it. If you keep doing that, he suggests that getting well is like chasing rainbows - the end keeps moving further away and you simply never get there. No, it won’t be a totally smooth ride, and there aren’t any promises, and it does take time - it cannot be rushed. But lots and lots and lots of good rest, especially early on, and during a relapse, is the most important thing in hopefully getting better. Make sure you rest - before the illness gives you no choice but to rest.

2. Pacing. But - secondly - that doesn’t mean that you should do “nothing”! It is important to keep doing things - but only in short amounts at a time. Managing your energy like this is often called “pacing”. Stay within your so-called “energy envelope”, and stop any activities before you get to the point of exhaustion and your ME symptoms getting worse. Clearly, how much you can do will depend very much on how severe your ME is. Some people can include a 1-mile walk as part of their day, others literally cannot get out of bed without severe exhaustion, fatigue, sickness and pain. With pacing, it is important to get a healthy balance between physical activity, and mental or brain activity, and of course rest, and relaxation. And just as doing impossible amounts of aerobic physical activity will make you worse, so overstimulating the brain is also bad and likely to slow down your recovery. Spending too long at a fast moving computer screen or phone screen, is actually one of the worst things we can do.

I’ll say a lot more about rest in my next videos soon, and how important getting good sleeping patterns are, and all about pacing and managing your energy. The other two crucial things to get sorted out as early as possible, I’ve talked about before.

3. Doctor and Diagnosis. Get a doctor who actually believes in ME, and knows about it, and who will support you. Make sure you get a correct diagnosis - see my videos 4 and 5. So many different illnesses can include symptoms of long term tiredness and exhaustion, so the right diagnosis is essential to ensure you are getting the best treatment and support. And remember what I just said about rest. If you do have ME, then the defining symptom is that after just the smallest activity, you have severe exhaustion that can last for days, and which can affect your circulation and blood pressure, muscles, hormones, immune system, brain and neurological symptoms like brain fog and seizures and hypersensitivity, pain, and generally make you feel awful, because every cell in your body is unable to produce energy - so much more than “just fatigue”. So if your doctor tries to force you to have Graded Exercise Therapy (GET) which keeps pushing the amount of activity you do, beyond your “energy envelope”, then change to a doctor who doesn’t. The experience of people with ME is that Graded Exercise Therapy is often actually harmful and dangerous, and causes the illness to get worse, and even leads to major relapses. And if someone tries to use Cognitive Behavioural Therapy (or CBT) to tell you that your illness isn’t real, or that you have wrong beliefs about your illness, when you really do have ME, then, again, change to a doctor who doesn’t. CBT can sometimes be quite helpful for some people in dealing with the massive impact that ME has on our lives, especially if it is leading to depression or anxiety - but only if it recognises the reality of the ME as a physical illness.

4. Support. And, fourthly, try and make sure you can find the support and information you need - from support groups and some of the more helpful websites and forums; try and find practical help with day to day things that you are not able to do; and emotional support, from family, friends, church or other groups. I’ve said more about that in my earlier videos 7, 8 and 9.

Eating good food and getting excellent nutrition is also really important (cutting out sugar and sweeteners, highly processed foods and refined carbohydrates), and so is stopping overloading your body with toxic chemicals (in pesticides, some household cleaners and toiletries, vaccinations and metal dental fillings, and so on). I’ll be talking about all of that soon - but the most important things first, rest and pacing and sleep.

No Poster Girl blog - http://nopostergirl.com/2011/11/30/to-the-newly-diagnosed/
Dr David Smith - http://www.me-cfs-treatment.com/