Muriel: ME is a tricky disease for a load of different reasons. Based in my personal experience, here are just a few to conjure with…
When I was diagnosed (1989) by an ENT specialist in London he made the following statement: “I’m telling you this because my GP wife has the same illness and I recognise the symptoms. However, I’ll not write it on your medical records because this diagnosis won’t do you any favours as most medics think it is a form of malingering. I know it’s not malingering, because I know my wife to be a very hardworking, mentally healthy person and over time I’ve come to suspect you are the same. I don’t know how to cure this illness because I don’t know what’s causing it. I wish you well.” I’ve struggled with varying degrees of ME ever since and have probably had it since I had glandular fever at age 19. Most of the time it has been treated, by medics, as depression that is not reliably responsive to medication. I have worked my way through the gamut of antidepressants while my longsuffering husband has tolerated my many years of varying health/illness.
24 years later, when our son Ali couldn’t recover from costochondritis, the local GP treating him at the time asked me to stay in the room when he had finished talking with Ali. He said, “I suspect this is ME/CFS and for Ali to recover you are going to need to be a ‘good parent’ here. He believes he is ill so is exhibiting ‘illness behaviours’. You need to ignore these behaviours and insist he continues at school as usual otherwise this could become a longstanding condition. It’s time to be a strict parent.” I took our (fevered, very weak, head aching, chest pained, perpetually nauseated, weight losing, known in our family as “Mr Bounce”) son home knowing that there wasn’t a chance that he was ‘making this up’. He loved school, especially PE and History. He wanted to succeed at Maths. He planned to train to be a PE/History teacher in a High School. He had a large, longstanding group of friends who he looked forward to being with every day. He got on with his teachers and used his self-effacing sense of humour and his very long stride to stay out of trouble with the bullies. He was skilled at caring. He loved playing football. And he absolutely lived to be active! He HATED being ill! He HATED being ‘left behind’ in school! He desperately wanted to stay with his peer group but couldn’t stand up or pay attention for more than a minute or two because he was so perpetually exhausted. He didn’t have the energy to eat, socialise, study or much else. These difficulties continue to this day.
A hallmark symptom of ME/CFS is that your energy system is broken. You ‘pay for’ every little exertion and any exercise makes you more ill rather than less ill. Some days are better than others but gains are marginal and easily squandered by overdoing it even a little bit. Post Exertional Malaise is the posh term for this ‘payback’ or increase in exhaustion and illness. It can be delayed by a day or three but when it hits you feel absolutely dreadful (like the worst flu you have ever had) and have little or no control over how long the payback lasts. Often you don’t recover your previous energy level so it is all too easy to slide further and further into severe (housebound or bedridden) illness. Each person with ME has a baseline of energy which they strive to maintain by pacing themselves. Adverse events, socialising, changes in weather, exposure to other people’s bugs, doing too much and often no discernible cause at all means that ME sufferers move up/down from their baseline in ways that are not anywhere near as controlable as would be useful. This makes it almost impossible for an ME sufferer to commit to any future plans because we quite genuinely have no idea how our energy will be on a given day.
Possibly one of the most misunderstood aspects of ME is that ‘paying’ for any degree of activity/exertion is partly immediate but also largely in the future. By this I mean that while I’m doing something, like writing this page, I get more and more tired with a speed and degree which is not ‘normal’. My brain works less and less well. My typing skills go to pot over a short period of time. All of this happens at a much more rapid rate than when my ME is not active. Were you to watch me, you would see me rapidly flagging. However, what you will very seldom have access to is the much bigger and more painful ‘payback’ that will hit me within 24-72 hours. That’s when I really pay for the damage that today’s overexertion has precipitated. That’s when the what I describe as a ‘biochemical storm’ hits with a vengence. In my case it’s like the worst possible flu plus lead instead of bones plus visual disturbances plus intollerance of sound and light and smells plus zero concentration and limited speech and burning up both day and night. This can go on for days. If I’m lucky it gradually passes and I return to a sort of baseline. If I’m unlucky a new baseline is established that is lower than the previous one.
Referals to various specialist services (in both our experiences) have returned an almost never-ending list of ‘not ………’ results. Whatever ME/CFS is, it is hard to pinpoint using current GP/specialists’ tests. In addition, ME/CFS is one of the “hidden illnesses” in that you rarely get any externally visible distinguishing signs such as a rash, broken bones, limbs missing, a bandaged head, stitches or staples and you don’t usually turn bright yellow, etc. Apart from being extremely thin (in Ali’s case) and extremely fat (in my case) there is little visible sign of our ills unless you knew us in our ‘previous energetic lives’ or around us long enough to notice that we are able to do very little each day. This hidden-ness causes HUGE problems anytime we are in public or evaluated for anything, since most people make sweeping assumptions based on what they can see ‘in the moment’. Some common unhelpful assumptions include:
- “They’re here so they must be OK”
- “They look normal so they must be normal”
- “They got here so there is nothing wrong with them!”
- “They can talk now so they must be able to talk like this all the time”
- “They have eyes and learned how to read so they must be able to read now”
- “They got to this event so they must be able to work”
- “They can stand up for a couple of minutes so must be able to shop/prepare/eat/clean up after making food”
The increasing degrees of exhaustion in response to doing too much seems to shut down various physiological systems in order to preserve life by keeping core systems functioning. The pecking order of this shutting down process can be different for different people. I lose the ability to find the right words first. Then depth perception goes so I get very clumsy and shouldn’t use sharp knives, cook, walk or drive. Then I also lose the ability to switch between or process multiple sounds – if two people are talking I can’t focus on one long enough to gather the meaning as I can’t block out the other. Then I get angry because anger produces a little dose of adrenalin which gives me just enough ‘kick’ to finish what I’m trying to do (but I know I’ll be paying dearly for having overdone it). Then it’s gut trouble, bladder trouble, migraines, grinding bone and joint pain, almost paralysing muscle weakness, all those horrid flu symptoms and very disturbed sleep all at the same time and for days on end with no way to relieve any of it apart from resting until it eases.
There is loads of new and interesting research about ME/CFS but the UK currently seems stuck with a flawed study from a few years ago (partly funded by the DWP) which says CBT (cognitive behaviour therapy) and GET (graded exercise therapy) are a working treatment. Sadly, the poor research methodology in this study ‘demonstrated’ a degree of recovery that is not the experience of any ME suffers I have ever met. This ‘treatment’ has been applied around the world and it will, no doubt, take a while for the air to clear once the flaws in this particular study are accepted for what they are.
That’s enough! I’m exhausted from writing this! So here’s a taster or what “I’m exhausted” actually feels like every day…. Here’s the link to a little video made by a delightful young person with ME who explains what ME exhaustion feels like. The difference between one day and the next is down to “the weight of the weights”.
And for those who like to get into the science stuff, https://t.co/UDipo6NPRT will take you to interesting slides from Dr Naviaux’s most recent presentation on his current research into ME. His is one very interesting set of findings – there are many other interesting new studies if you fancy looking at a site such as Healthrising.org. Dedicated researchers are methodically converging on an understanding of what goes wrong in ME. Then they can start looking for how to repair it.
And for a broader view of what it’s like to live with this mystery illness there is Jennifer Brae’s movie which I highly recommend.
Or there’s a recent article about ME/CFS folks’ difficulties in accessing services in Australia https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up as they live with the fallout from the same PACE study as still reins supreme in the UK.
Or a Huffington Post article on methodological weakness in the PACE study http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html?ncid=engmodushpmg00000006
Or there’s a splendid podcast from Science Friday’s Undiscovered team. They look at the differences between the views of the researchers on the PACE study and the experience of ME/CFS sufferers and how these differences eventually led to an expensive court battle with implications for science in general http://www.undiscoveredpodcast.org/sick-and-tired.html
So far, the PACE research – partly funded by the DWP (Department of Work and Pensions in the UK) – continues to be relied on by government policy makers and underpins the psychosocial/psychosomatic model which pervades current UK social policy. Nor has there yet been a retraction from the various prestigious journals that published articles based on this flawed and as yet unacknowledged ‘conflicts of interest’ research. We live in hope!