M.E./CFS

There are some people in this world who do not believe in the diagnosis of M.E./CFS, simply because it is a very tricky disease to diagnosis physically (e.g. through blood tests).  However, as more and more research comes into play, the ability to prove a diagnosis of M.E./CFS is starting to happen.  If you are one of those people who believe M.E./CFS to be purely psychological or even think it’s a “lazy persons” disease, then I encourage you to read on and educate yourself.

M.E. (which stands for Myalgic Encephalomyelitis), otherwise know as Chronic Fatigue Syndrome (CFS) is a complex and poorly understood disease.  It is a fluctuating neurological condition that presents with a variety of symptoms.  The name M.E. quite literally means muscle pain and brain and spinal cord inflammation.  Whilst this inflammation can be hard to identify, newer research has shown that it is apparent through imaging.  This may be why the name M.E. was changed to CFS, as it eliminates the fact there might be any hard-to-find inflammation associated with it.  There is also a lot of current debate about further classifying types of M.E., but in the UK both M.E. and CFS are used interchangeably.

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I was diagnosed with M.E./CFS in late 2016 after experiencing gradually worsening fatigue, headaches and an inability to stay at work.  Unless I’d had a pretty fab GP, I wouldn’t have given the disease a second thought.

As already mentioned, there is a huge variety of symptoms that are associated with M.E./CFS, and you can view the full list at the Action for M.E. website here (a UK M.E./CFS charity).  The predominant symptoms are often;

  • severe, overwhelming fatigue and exhaustion that limits your normal daily activities
  • post-exertional malaise (almost like fatigue pay-back that kicks in a day or so after an activity)
  • severe muscle and joint aches and pains
  • feeling like coming down with the flue constantly (sore throat, swollen glands)
  • headaches and migraines
  • unrefreshing sleep – waking up feeling like you never slept
  • poor sleep quality – difficulty falling asleep, waking frequently, trouble remaining asleep
  • problems with cognitive function (e.g. poor memory, reduced attenion span, speech and language problems)
  • autonomic dysfunction such as poor temperature control, poor blood pressure control (usually low), poor circulation
  • loss of appetite
  • sensitivity to bright lights and loud noises

Although I didn’t realise it at the time, I had quite a few of these symptoms before I was diagnosed because they were not ones I’d normally associate with fatigue.  Currently, my main M.E./CFS symptoms include severe fatigue and exhaustion, muscle and joint aches and pain, a weird-type of headache (it almost feels like pressure, but isn’t like someone is squeezing my head – only ever happens with an M.E. flare), sore throat that lasts for ages and various autonomic problems.  Whilst my symptoms are fairly well managed, for some individuals the vastness of them can mean they really interfere with everyday life.

Unfortunately, there is no clear diagnostic test for formally diagnosis M.E./CFS.  Instead, it relies on set criteria from the NHS NICE Guidelines (National Institute for Health and Care Excellence).  These criteria are;

  1. symptoms must have started recently, lasted for a long time and/or keeps coming back
  2. means a person cannot do the things they used to do
  3. symptoms get worse after activity or gentle exercise
  4. must have some of the below symptoms;
    1. problems sleeping
    2. muscle or joint pain
    3. headaches
    4. sore throat
    5. problems thinking, remembering or concentrating
    6. flu-like symptoms
    7. feeling dizzy or sick
    8. heart palpitations

See?  Bit chaotic.

But diagnostics are moving forwards.  I have read about blood tests being developed to look for specific inflammatory markers, proteins and antigens, and even looking at the the function of cells mitochondria (the part that provides cells with energy), but these are not available in the NHS.

Similarly, there is no agreed cause for the disease. Whilst there is the never-ending argument about this disease being caused by our brains, newer evidence is looking at multiple factors that may lead to its development.

Some people believe the psychological problems can cause M.E./CFS.  This centres around things such as stress, previous trauma and pre-existing conditions.  It is thought that the way we feel about ourselves or a situation can make physical symptoms worse.  The disease is even listed on various mental health websites.  However, you should not forget that many many medical companies have proven it is a biological and physical illness.

Others believe that M.E./CFS occurs after an infection like Glandular Fever or a nasty virus.  The theory suggests whether the viruses or bacteria trigger a body response that leads to M.E./CFS developing.

Another cause that has been suggested is that M.E./CFS is an autoimmune problem.  This has mainly come about due to the fact people with M.E./CFS have impaired immune systems and are often susceptible to other diseases.  However, there is no proof that an impaired immune system would cause this disease.

I think all these supposed “causes” do is prove how little we know about the disease and how much more research needs to be done.  Take me for example – my GP and M.E. specialist team believe that I developed M.E./CFS after spending years in constant pain and having a large number of operations in a short space of time.  I never had an infection or virus beforehand and I don’t have any psychological problems.  It is important that each person with M.E./CFS if treated as an individual.

Treatment of M.E./CFS focusses on pacing and balacing activities out to reduce long periods of high energy and fatigue.  There is no medication that treats M.E. and there is no cure – some people can make excellent recovery whilst others don’t.  When I was diagnosed, I did a group therapy session for 6 weeks as well as a couple of one-to-one sessions, which focussed on the below things;

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Pacing and Activity Management – focusses on balancing your activity levels to avoid periods of over-exertion or prolonged high energy usage.  It aims to find a stable level of energy usage and decrease episodes of fatigue or post-exertional malaise.  A good example of pacing is looking at how many hours of activity you do over a week, and then dividing it by 7 – this should give you the average number of hours you should expend energy for.  This really came in useful for me when I was trying to get back into work.

Medication – as mentioned, there is no tablet or treatment than cure M.E./CFS, however some medications that are used for other things (e.g. anti-depressants) have been found to help some people with sleep, pain and nausea.

Alternative Treatment– Holistic therapies (e.g. acupuncture, massage, reflexology) have been found to be beneficial to muscle pain, migraines and fatigue.  These treatments are not available on the NHS, and often have quite individualised results.

Cognitive Behavioural Therapy – CBT is a type of talking therapy where you focus on the present and manage current problems, rather than thinking or talking about the past.  It provides useful methods to change the way you think or behave (linked to how negative emotions have an impact on physical symptoms) and often teaches things such as mindfulness.

Graded Exercise Therapy – I need to touch on this one as I personally believe it is dangerous.  This is a type of treatment that gets an individual to gradually increase the amount of exericse they are able to do, in a bid to reduce fatigue and build up tolerance.  My M.E. team have opinions on this type of treatment, as it can be harmful to sufferers, particularly those with severe M.E.  Thankfully, NICE are in the process of updating their current guidelines for the management and treatment o M.E./CFS, so hopefully this will no longer be a part of it!

Diet and Nutrition – For some people, improving your diet and nutrition has helped eased their symptoms.  For example, giving up caffeine and eating more fruits and vegetables.  Ensuring you have a good and balanced diet is key, as it will provide you with the right type of energy.

Personally, the most effective methods at managing my M.E./CFS are pacing, balancing and holistic therapies, but also ensuring that my other conditions are well-controlled to avoid days spent in pain.

My journey with M.E./CFS has been a tough one – at the height of my symptoms and diagnosis, I was signed off work for 2 weeks and then placed on a very strict phased return to work for approximately 5 months.  However, I am super proud to say that since February/March 2017 I have maintained working full-time without too many problems.

M.E./CFS is an ongoing illness with turbulent ups and downs – the general understanding and perception of this disease is poor, and something I wish has helped people get over from reading this article.