The CFS/ME mythbuster!

There comes a time when you meet someone new when you find that they need to know that you have CFS/ME. The time that this is appropriate is not one that can be standardised. However, when that time comes there are a few frequently asked questions that I have found require a quick and effective answer. Here are a few. I hope that this may help people who both find explaining it difficult and those who find understanding it difficult.


So... what is it?
M.E. or C.F.S. (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) is a neurological condition. I like to describe it in two ways.
The first is that my muscles don't behave in the normal healthy way. By this I mean that the way your body reacts usually when you exercise (such as a good feeling after exercise, the building up of stamina etc.) don't happen. Instead I feel really sick after exercise and I can't build up stamina. I can do the same gentle exercise every day and it get harder rather than easier.
The second is that my body overreacts to everything (it's a bit of a diva!). This includes exercise, but also stress, certain food, getting too hot or cold, anything really. Personally I don't eat dairy and I explain that this is the reason why - before I developed CFS/ME I could eat dairy more or less OK.
This doesn't encompass everything though, some symptoms such as dizziness, concentration problems and memory problems are not included really.


So to summarise:
- It's a neurological condition (caused by the nervous system)
- My muscles don't respond the right way to exercise of any kind or intensity
- My body overreacts to minor stressors that would normally be dealt with without you noticing.


How long have you had it?
Obviously this varies from person to person but in my case it has not been the same severity over time. I don't know if people assume it's the same all the time?


I say I have had CFS/ME for 5 1/2 years now on and off, but I was only diagnosed last year. I do have good days and bad days though and say if that particular day is good or bad.


Can you treat it?
There is no standard treatment and some treatments work well in some people and not in others.


I personally am given vitamin B12 injections to help with the dizziness, fatigue and concentration as well as antihistamines to make me drowsy at bed time.


Some people also take food supplements such as CoEnzyme Q10.


The best way to manage it is to pace myself and to balance work and social time with rest. The best form of rest is lying down in bed doing nothing so sitting in a chair is tiring.


How is it diagnosed? How do you know you have CFS/ME and not something else, or am just tired like everyone else?
Unfortunately there is no specific test that shows you have CFS/ME. Instead there are symptom criteria that you have to meet in order to get a diagnosis. It is also a diagnosis of exclusion in that doctors have to make sure you don't have another illness that has similar symptoms, such as lupus, anaemia or thyroid problems.


I know that I have CFS/ME because I fit the criteria exactly. I know this is not usual tiredness because I was healthy beforehand and I know what it is to be exhausted in the usual way! My instinct is to push through (although I may moan about it while pushing through!) but I tried that since being ill and it made things much much worse rather than better. How my body feels and reacts to things is like nothing I have ever experienced before. I do not feel tired most of the time as I can't physically do enough to get tired. That is why I try to describe it as my muscles not working as that is the closest sensation I can think of.


At worst, any muscle use hurts very much, even moving my eyes or fingers.


Are you sure this isn't something else? Maybe you have depression?
I have come to realise that maybe CFS/ME can present itself in a way that looks like depression to others but it is definitely very different.


In depression, the motivation to get up and move and to get involved in things is gone.
In CFS/ME the motivation is very much there but the body physically can't do it.


In depression things that you used to enjoy have less or no enjoyment than before.
In CFS/ME you often can't do the things you enjoyed. You would still enjoy them if you could actually do them! Although sometimes the enjoyment is reduced because of the frustration or the physical pain of doing them.


In depression you spend a lot of time alone in bed because your motivation to get up is lacking.
In CFS/ME you spend a lot of time alone in bed because you are too weak to leave or because doing so helps you manage your symptoms.


Maybe you're just unfit. Come out for a walk with me, that will make you feel better.
Apart from this being a highly annoying and frustrating thing to say to someone with CFS/ME... as previously said the muscles can't function well enough to gain stamina through exercise. However this is the view of some doctors - that patients are just unfit and so scared to exercise because of the negative results of exercising with no muscle stamina.


I can say from personal experience this is not true. When I relapsed in first year I thought that I must just be unfit and so attempted to build up my fitness through gentle walking, by pushing through when I didn't feel like exercising. All this achieved was to greatly increase my suffering. Also, I relapsed pretty much overnight (I assume I had pushed my body just that little too far and it gave up). The day before I had been running around perfectly fine.


Is it contagious?
No. It has been linked to a virus, but from what I have researched this seems to be due to the body's overreaction to the virus or something along those lines. There is no way of transmitting it from person to person. Any genetic link is yet to be investigated though.


Would energy drinks or coffee help?
Unfortunately no, I have tried. All they achieve is a massively high heart rate!


There, I hope I have busted some myths about CFS/ME!!

The Symptoms and Nature of CFS/ME

I have mentioned before that I would do a post on the symptoms of CFS/ME and I think today is the day! But I will also talk about the nature of the condition as I think that it all becomes confusing, and people make wrong assumptions.


So firstly, there's the fatigue thing. What does that even mean?
The fatigue involved in CFS/ME is very different from normal tiredness (in the last 9 months since my crash, I have maybe felt tired in the normal way maybe 10 times?). Normal tiredness comes from being busy and if your day has been productive, it can feel quite nice at the end of the day to be tired and sleepy as you head to bed.
That is why the condition is called Chronic Fatigue Syndrome, rather than Chronic Tiredness Syndrome. The best description I have heard so far of what it feels like is that your muscles don't really work properly. You tell your legs to go up some stairs and they get stuck on the first one. It feels like the energy is simply not there, like when your car completely runs out of petrol. Other analogies include the feeling of walking through treacle.

What does this have to do with post-exertional malaise?
Post-exertional malaise (PEM) sounds fancy but all it means is that you feel HORRIBLE after any activity. That includes sitting upright in a chair, or cooking dinner. How a normal person may feel after a hefty work-out at the gym doesn't even come close, and I can say that from experience as I used to enjoy a good gym work-out.
The PEM worsens every other little symptom that is there in a CFS/ME sufferer.
PEM also causes a weird thing which has been likened to sunburn - very little effect at the time, but a major effect hours or maybe days after. So a sufferer could go for a long walk one day, and then be bedridden for the next 3 days. This looks rather odd to others as normally the ability to do something one day is indicative of the person's ability always, but with CFS/ME the opposite is the case.

Is there pain involved?
Luckily I have not suffered much with pain, but a lot of people with CFS/ME have crippling pain which, similar to the fatigue, is worsened by activity. I can only really speak from experience with this one as describing pain is tricky. Personally, I ache a lot, and when my muscles have been used too much (for me, that is) they hurt.

Dizziness leads to me being at least in a sitting position, if not lying down for most of the day.
If I close my eyes for a second, and then open them, everything spins for a couple of seconds before righting itself.
Standing or walking for any prolonged space of time (like more than 5 minutes) can lead to varying degrees of dizziness. Multitasking while standing or walking increases the severity of the dizziness and the speed at which it comes on. The number of times I've almost fallen over because the world has been toppling about...

Feeling nauseous doesn't help either.
Fairly self-explanatory I think. Not helped by the dizziness, mind.
I normally get this when I have really pushed it, you know, by maybe walking around the block or something.

Sore-throats appear to crop up.
I have heard of a number of sufferers, myself included, who seem to have some form of sore-throat at all times.

Concentration and memory problems.
Also known as brain fog. This appears to occur in conditions such as M.S. too, but with a different name. Imagine you on a bad day when you overslept and you're groggy. And maybe a bit hungover. That's brain fog more or less, but it happens all the time.

Not really helped by sleep problems.
Anything you can think of that could go wrong with sleep, goes wrong at some point: can't get to sleep, can't stay awake, keeping waking up, really vivid dreams, can't wake up in the morning. Mostly the problem is that it is unrefreshing, although the dreams have been getting weirder and weirder.
The tendency is to swing towards sleeping for 15 hours a day or so, to hardly sleeping at all. Not much inbetween.

And then just loads and loads of random stuff like:

• food and alcohol intolerances.
• sensitivity to sound, light and touch.
• difficulty judging distances.
• problems with body temperature regulation.
• difficulty focussing on objects.
• sensitivities to various medications.
• numbness and tingling.
• many more really quite random stuff.

The nature of CFS/ME.

• Not everyone gets all the symptoms, but all will have the fatigue problem, and high percentages of sufferers have been found to have all of the symptoms listed.
• The symptoms can be managed by careful rest-activity balancing. The worse the CFS/ME, the more the balance must sway towards rest - in severe CFS/ME you must rest virtually all the time.
• The rest needed for sufferers is total, as in lying in bed feeling relaxed. Sitting with friends watching tv counts as activity.
• Symptoms are not in a normal proportion to activity so you can't make predictions. They are also affected by mental activity and strong emotions so even being excited can wear a sufferer out very quickly.
• A sufferer will have good days and bad days which aren't always related to activity, although they can very roughly be correlated.
• It is present at all times, even when a sufferer appears to feel fine. Things can tip the balance towards more severe symptoms even once a person appears to be recovering. It's like the clutch pedal in a car - it can go down very fast, but has to come up slowly else you stall.
• It's not contagious.
• Stimulants like coffee have no effect other than maybe to make sufferers feel worse.
• It is totally different from having temporary insomnia, in that a few days of not doing much is nowhere near going to fix the issue.

I hope I have covered everything, if not at least enough for now. I don't mind answering any questions, however stupid they may sound, and if you've got this far, thanks for reading!!

The Fear of Stopping

Many people without CFS/ME find it difficult to get their head around the behaviour of those with CFS/ME. Sufferers can sometimes be spotted walking around, looking perfectly fine, sometimes for days on end. You may meet up with a friend for lunch who has CFS/ME and they may look as if nothing at all is wrong.

Well, it's not called an invisible illness for nothing, and may in fact be one of the most invisible due to the presence of what is known as Post-Exertional Malaise (or PEM for short).

And what's PEM when it's at home? All it means is that symptoms flare up even more than usual and dramatically out of proportion after any kind of activity. So a meal out with friends may leave a healthy person very slightly tired but nothing more and the tiredness at the end of the meal doesn't get any worse unless you do more. Whereas, a CFS/ME sufferer may go to a meal, feel very tired by the end but then feel 20 times worse the next afternoon. And this feeling worse may last a few days.

So the consequences of activity are hidden. Your friend with CFS/ME going out with you yesterday is not a good reason for being able to go out today - in fact it's the opposite!

Now I don't want people to pity me and fuss, but some little understanding of this can go a long way. Treasuring the time with people with CFS/ME is vital as socialising is something that can only be done periodically.


There is also this fear of stopping. This is because a sufferer can run for a limited amount of time on empty but it always catches up with them (i.e. PEM), just like a short-term bank loan with a high interest rate. It's when you stop that the problem occurs, and there comes a point where you have no choice but to stop.

There are two ways to deal with this fear of stopping:

1. You stop loads, like every 30mins or so. And you do very little. Makes for a boring lifestyle I know, but personally I think it's worth it to actually feel well for most of the time. Someone doing this may be constantly saying no to outings and activities and appear anti-social, but for the vast majority of people, they wish they could join in and pay a high price for their healthy feeling. This is called pacing.

2. You run on empty for as long as you possibly can so that the stops are further apart. This makes for a much more 'normal' lifestyle but only for some of the time. More time must be spent recovering and the sick feeling (understatement here) is very strong. Personally, I think this is a very unhealthy way of managing the symptoms but it can make you feel more normal. Someone doing this may appear to be perfectly normal when you see them and you may wonder how they are sick at all. I think this method is only possible for mild CFS/ME but I may be wrong.

There is also the possibility of an inbetween method where most of the time you do 1 but a special event comes up and for a short while you do 2.

I wanted to write about this because people with CFS/ME are very easily compared and seeing people who follow 2 can make people who follow 1 more weak, when in fact both methods, or even having this condition at all, makes you a very strong person.