ME and CFS

Lets jump straight into the controversial question: “If this synchroblog thing is for ME awareness week, does that mean I can’t write about CFS?”

Short answer: Of course you can write about CFS, or CFIDS, or Icelandic Disease, or whatever you’ve been told it is you have.

Long answer: Why do I say ME? Because from a couple of years of research, I think there is a distinct difference between the neurological disease Myalgic Encephalomyelitis and the crazy oft-misused oft-wastebasket-diagnosis CFS. And I also believe it’s important that we untangle the mess of CFS, scientifically, and work out what distinct groups we do have so as to further treatment. However, there are a whole bunch of good reasons to not limit this to “ME”, including but not limited to these:

  • In the US, ME is actually called “CFS” or “CFIDS”
  • In the NHS (contrary to international medical guidelines) ME is actually called “CFS”
  • In a vast number of cases, people who have ME are told they have CFS
  • In a vast number of cases, people in this community don’t even definitively know what disease they have
  • It’s actually an awareness week for a whole bunch of nasty conditions, not just ME
  • There is no real consensus within the community on where dividing lines are anyway, and me setting one will just lead to exclusion
  • Science hasn’t yet definitively shown what the cause, cure or treatment of the physical condition we’re dealing with is… or even whether we are dealing with just one condition here
  • Whether ME and CFS are referring to the same thing in certain cases or not, people with ME and people with non-ME fatiguing conditions have all been thrown into the same boat together

So since we’re all put together, in my opinion we should work together to get out of it – even if we have different conditions, even if we have different views, we are stronger standing together and saying “the way we are treated is not acceptable” than by devoting our energies to infighting. Because, frankly, the position we are in is unacceptable.

It’s not just unacceptable that people with ME have been told it’s merely “chronic fatigue” – it’s unacceptable  that people without ME have been told it’s merely “chronic fatigue”. It’s not right that people with depression have been told it’s merely “chronic fatigue”. It’s not right that there are probably a whole host of illnesses not getting treated properly because they’re mislabelled, whatever those illnesses are. It’s not even right that people who do actually have just a case of ‘chronic fatigue due to psychological factors’ – and I’m sure a few cases of those must exist somewhere – are embroiled in this war and fight themselves, having to deal with all this misleading information which they shouldn’t even need to, because other people with unrelated illnesses are put in their box.

We can argue all day about what illnesses are actually represented by our diverse community, what the causes are, and how to treat them best, but what it comes down to for me this week is that we are all in this mess together, and we can help each other or we can hurt each other. If all we do is shout at each other about it, we’ll make a lot of noise and not much progress – but if we shout at the world, then maybe we’ll get somewhere.

So, whatever you call the nasty condition, feel free to blog about it in this synchroblog. Call it what you always call it – it’s your outlet, not mine. Do you best to raise awareness, alongside everyone else. And I ask that if you have strong feelings about namings (or other controversial topics), don’t use that as an excuse not to participate. Instead, why not write about why you hold to those opinions, and why they are important? Not as an attack on other participants, but as an angle to raise awareness – it’s an important aspect of the disease in itself.

ME Awareness Synchroblog

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2 responses to “ME and CFS

  1. Nicely put. What is needed all round is a little less arguing about the names, and a little more concrete research into the symptoms, causes, triggers, and treatments.

    I agree that “CFS”, like “depression” and “cerebral palsy”, is an umbrella term. It is useful as far as it goes, but it doesn’t go that far. You can’t say that what works for one will work for all, either – there are simply too many variables.

    • Agreed….. until there are useful biomarkers and definitive tests none of us really know anything other than how set of symptoms affects each us individually.

      The NHS has still not given me a diagnosis despite my own doctor suggesting chronic fatigue (what an inadequate description) about a month after I became ill. I have twice been to the local CF clinic, but my last app was last August and even the specialist there has given no diagnosis despite being ill for over a year now.

      A private consultant however has at last told me I have ME/CFS and as far as I am concerned my life has been turned upside down by my physical limitations! Whatever it is, it sure ain’t depression even though at times the symptoms are depressing! LOL…

      Great idea for the blog roll…. I’ve a post up on my blog now about my daughters fundraising efforts…. http://sallysewssometing.blogspot.co.uk/

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