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!!

Turning point

I haven't written on this blog for quite a while now. This is because it was pointed out to me that some of what I had written was inappropriate and hurtful. I have since deleted the particular posts (although if I have missed any, then sorry) and have said to myself that should I return to the blog that it would take a turn back to the purpose it was intended for - to educate and inform people what it is like to have CFS/ME - and not to be the place I turned to let out my feelings when at my worst. Some people have suggested I step away from the blog, but others have suggested I keep writing and I have thought about this a lot. I have decided to return, but to set a rule to myself that I will never write when I know I'm at my most poorly, and let out any feelings constructively way before they get to the point of destruction.


And so, to start afresh slightly today's post is going to be on things that have helped me with my symptoms and their consequences. I take so many supplements and medications that it is probably a bit difficult to say exactly what makes the most difference, but put together they seem to work. Working out which is most effective scientifically is not possible right now as it may require removing an important medication from my collection and may send me back into a relapse, which I can't afford right now!


And so firstly, here are some supplements that I take:

• vitamin D - this was suggested by a rheumatologist I saw last summer who found that I had low vitamin D levels in a blood test. Not necessarily related to CFS/ME but it has been linked to muscle function so maybe it has some importance.
• l-carnitine - this supplement was recommended to me as one that may or may not help. I'm not entirely sure what it does, but I think it may again have a link to muscles.
• co-enzyme Q10 - this supplement was recommended to me by a CFS/ME consultant on the NHS but I don't think it has any clinical backing. It seems to have had some effects though! Possibly linked to the production of energy in cells?
• avoiding dairy food - not technically a supplement, more of a subtraction, but it's to do with diet so it's going here. I haven't eaten dairy since I first got ill almost 5 years ago. It made such a difference! I am mildly lactose intolerant anyway and somehow the CFS/ME exaggerated it so this was definitely a good move.

Secondly, here are the medications I take. I know some people are reluctant to take drugs but I have really found these helpful:

• hydroxyzine - (brand name Atarax). This is an antihistamine but I take it because it has a side effect of drowsiness, with the aim of it helping me to sleep. It doesn't make me drowsy but it does make me feel more relaxed and has made so much difference to my sleeping patterns.
• vitamin b12 - I have put this here because I have it administered by injection by a nurse instead of taking tablets. These have been taken weekly so far but I think that is due to go down to fortnightly. I believe these have helped a lot too, but having no original b12 deficiency, their prescription was a little unorthodox.

And lastly, behavioural things I do to look after myself:

• focus on keeping calm - any kind of stress or excitement can increase symptoms and so I focus throughout life on keeping calm and in control. Not easy of course but recognition of these emotions in itself makes a difference.
• limited exercise - I hate this one, I would love to go running but it has made such a difference to limit my exercise to what my body can do without complaining.
• proper rest breaks - again, I don't like this either because at 20 I want to be out there doing things but consciously stopping for breaks gets me through the day.
• making all activity more energy efficient - this involves some conscious thought and self awareness, and so maybe talking it over with a friend or family member may be helpful. What can I do to make that activity less effortful? (e.g. sitting down while cooking).

I think many people with CFS/ME have their own concoction of pills and supplements but I thought that this may give people some idea of things they can try if they are new to this. Unfortunately a lot of these cost money (either shop bought or prescription charge) but I think you can get help with prescription charges if necessary.