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.