5. Diagnosis

Diagnosis of ME, and how important it is to get a correct diagnosis.


Hello! So, if you made it through my last video, I was saying that “ME” and “Chronic Fatigue Syndrome” often seem to be used as labels to cover a number of conditions, which may or may not be related, to differing extents. They are often considered as one specific illness. But it is vitally important for your doctors to investigate thoroughly what is making you ill, and not just give up, or jump to conclusions - to make sure that you get the correct advice, treatment and support.

Because, with ME and chronic fatigue syndrome, different people could be suffering from a range of different unknown conditions, all needing different treatments. And in some cases, there are other illnesses which can result in some of the same symptoms as ME and chronic fatigue - and they would need to be correctly identified and diagnosed instead, and then treated, if they can be.

Unlike other illnesses, there isn’t an ‘official’ diagnostic test yet, like a blood test or brain scan or anything, to show whether you have got ME or not. That means you could be told you’ve got ME when you’ve got something else, or you could be told you’ve got something else when you have got ME.

ME can be diagnosed by your GP, - but if at all possible, it’s a lot better to get a full diagnosis from a consultant physician at a hospital or specialist ME clinic, who has got experience and expertise in diagnosing and supporting people with ME. They should take a full and detailed medical history, including anything that might seem relevant, as well as anything that might seem unrelated. They should find out about all your symptoms and problems with the illness now, and examine you thoroughly. At some point there’ll be a range of blood tests - and probably other neurological tests and so on - to identify any other known illnesses, or to rule them out. I listed quite a few of the other illnesses that can cause ME-like symptoms last time - although not all of them!

Research into ME has shown again and again that it is a real, and severely debilitating illness - or group of related illnesses. A whole range of serious abnormalities do keep showing up in people who have ME, in various neurological tests and scans, blood tests looking at immune responses as well as how the body’s cells produce energy, tests on blood flow in the body, and more. However, so far, these results have usually just been used for research, and haven’t been widely accepted for diagnosis. There’s a huge amount of very useful and detailed information on the Hummingbirds’ Guide website, about tests which could be carried out, and about how ME is different from some other general types of fatigue that might get diagnosed. Dr Sarah Myhill’s website also suggests blood tests which can show up severe abnormalities when people have ME.

But, at the moment, diagnosis of ME is generally done by doctors by a process of elimination, by excluding other illnesses. Then, the general guide doctors use is that when you’ve had several of the characteristic ME symptoms for 6 months or more, and when your activity levels are limited to around half of your previous normal activity levels, or worse … then you may have ME.

I talked briefly about the symptoms earlier, - but for it properly to be called ME, rather than a general fatigue, certain factors need to be in place. You will have the severely reduced stamina and very delayed recovery from fatigue, as well as actually getting measurably ill and worse after exertion or exercise. You will also have a range of problems affecting your brain, your concentration, your sleep, your hormones, your autonomic nervous system (for example, low blood pressure when you stand up, or your body not being able to regulate its temperature properly), and your immune system. If you’d like more details about the official “criteria for diagnosing ME”, have a look at the Nightingale Research Foundation’s “definition of ME”, or contact the ME Association.

As I said, it’s so important to get a correct diagnosis as early as possible - although that’s a bit difficult if doctors are saying that by definition ME can’t be diagnosed until you’ve already been ill for 6 months! But when you do get a diagnosis of ME, or of post viral fatigue, or chronic fatigue syndrome, then you’ve got to get the right support and advice early on, for the best chance of making the best recovery. So, make sure your doctors do actually believe in your illness. If they don’t, then change doctors! When I’d been seriously ill with glandular fever for just one month, my GP at the time said to me, “I don’t think ME exists, but I think you’ve got it”... which really wasn’t helpful, was it? If at all possible, try to have regular support from a doctor who specialises in ME. And I’d say it’s pretty much essential, especially early on, to see a good physiotherapist or perhaps an occupational therapist, too. Your doctor should arrange this for you.

I can’t emphasise this enough, but the people you see must have a real understanding and experience of helping people who are ill with ME. Otherwise they might try to force you to do more than you can, or suggest that you’re not really ill, which could actually make you quite a lot worse. And you’ll need a huge amount of support and understanding from your family and friends - so it’s important to try and help them understand what ME is, and what it isn’t, and how they can help you - and then, to let them help you.

Hummingbirds’ Guide www.ahummingbirdsguide.com
Dr Sarah Myhill www.drmyhill.co.uk
Nightingale Research Foundation www.nightingale.ca
ME Association www.meassociation.org.uk