Thursday, 23 March 2017

Is CFS a Mental Health Issue?

This may be a controversial post, stick with me though before you make your judgement. I want to voice the question I have had in my head for a while now, is Chronic Fatigue Syndrome (CFS) a mental health issue?

The Best Version of Kelly

I ask this question for many reasons to be honest. I’m not sure the structure this post will take so I am just going to throw out my thoughts in a random order and see how it goes. I hope it will then raise some conversation amongst my readers, comment below or on any of my social media. If I get enough feedback I will do a follow up post to hopefully get us closer to the answers.

To save me repeating myself, if you haven’t read my CFS story you can find it here.

For a couple of years before my diagnosis I had been visiting my GP about my fatigue. They always suggested, due to my history, that it was a symptom of depression. I was adamant that I knew my body and my symptoms and this was different but I begrudgingly went back onto to anti-depressants as I was offered no other options. My mantra at that time was:



Being tired all the time can be depressing. Coming to terms with a chronic condition can depress you. If you already have a long-standing history of depression, as I do, then a CFS diagnosis can trigger depression.

Depression can cause fatigue. Fatigue can cause depression. I can see why my GP made their assumptions the way they did but my input should have counted more. I think we know our bodies better than anyone and we know which condition is casing which symptoms and at which times.

Depression and CFS are both a part of my life every day. Some days I manage them effectively and some days that is harder. They are separate conditions though. Some symptoms are similar and the conditions certainly aggravate each other but they are separate.

The Best Version of Kelly

I also have a history of anxiety. I am an over thinker, a worrier, someone who panics easily. I am a very emotional person, or as some might say I am ‘highly strung.’ I always have been.

I often wonder, in fact I am convinced that my CFS is a result of the years of strain I put my body under due to my stress, depression, anxiety, and general over thinking. This is of course just my opinion. I do however come across other people who suffer with CFS who also have a history of mental illnesses such as those I suffer with.

So, is our CFS a result of our mental illness and if so does that make CFS a mental health issue?

I feel certain not all cases of CFS are the result of mental health. Many people get it for several reasons I am sure. I imagine most cases are the result of some sort of intense or prolonged strain or stress on the body, whether that stems from mental illness or something physical.

Our mental and physical health are so closely linked. I don’t think we all understand just how much. It seems widely agreed that good gut health and exercise can both be beneficial to our mental health.

We also realise that something purely mental or emotional can cause a physical reaction. For example, feeling nervous can make you shake and feel ‘butterflies.’ Feeling embarrassed can cause you to go red. Feeling upset can cause tears. Feeling something is funny causes laughter. All physical symptoms to a mental condition.

The Best Version of Kelly

I’m sure my CFS is made worse when I am stressed, anxious or depressed. My body is reacting physically to those mental conditions.

They are genuine physical symptoms as real as tears and laughter and as impossible to control but they are a result of the mental trigger.

Now don’t get me wrong, the mental triggers are also almost impossible to control. It just interests me the relationship between the two.

Sadly, I also realise that CFS is about so much more than mental health. Over exertion physically can also cause me to crash.

I don’t think, even if it were possible, that solving my mental health issues would cure my CFS. I do believe they caused it though.

Even GP’s treat CFS as a mental health issue. The two treatments they can offer are anti-depressants and Cognitive Behavioural Therapy (CBT). The same two treatments offered to depression sufferers.

The Best Version of Kelly

I was eventually also referred to a rheumatologist, although even he didn’t seem to know why, he didn’t know much about CFS. He was more interested in my elbows, apparently, I have hyper-mobility in them, who knew?!

He said the only CFS expert in Leicestershire had retired so I could only be referred on to a physio.

It’s terrible that a whole county has no expert in such a widespread condition, but that’s a separate point all together.

The symptoms of CFS are physical and they are physically debilitating. Physical exertion will cause a flare up of the condition in sufferers. So yes, it is very much a physical condition and needs to be researched and treated as such.

However, I strongly believe that mental exertion will also cause a flare up and this too needs to be considered.

I also believe long term mental health sufferers could be more susceptible to contracting CFS and I think this too must be researched.

So, what do you think? Is CFS a mental health issue? Please comment and discuss this point.

Thank you for reading.

(Complete aside – apologies for the repetition with the photos, we haven’t got out to take any new ones in a while.)

Kelly x

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  1. Hi Kelly,

    I read your blog, which I'm sorry to say, you rightly identified as potentially contentious. You clearly realise your view is not popular, so perhaps you might wish to contemplate why that might be.

    How you describe yourself and your views is clearly your understanding of CFS but perhaps only because you were given that diagnosis and because of your experience of your own suffering.

    Your descriptions and views oppose what sufferers know from experience and some oppose what science knows as fact, so it's entirely possible you do not have CFS at all.

    Many people with CFS are misdiagnosed. Professor Julia Newton of Newcastle University thinks about 40% with CFS are misdiagnosed, so I certainly wouldn't rule out other conditions just yet.

    I was speaking with a thyroid specialist about six months ago who told me that many who visit him with a diagnosis of CFS, actually have a treatable thyroid problem; about 20%

    The reason I mention this is because I wonder, just from your visual appearance and a lot of what you focus on and say about your mental health concerns and your general fatigue, whether in fact you might actually have a treatable thyroid problem that's causing your suffering.

    Unfortunately, the NHS often rule out thyroid issues either because they only test TSH or because your tests are within their range. However, if you're at one end of the scale and are symptomatic, I'd personally be seeing a specialist.

    If you've had bloods done, which you should have had with a diagnosis of CFS, you could at least check to see if you are in fact within range but at one end of the scale or not.

    There are a number of other potential causes of course that don't get picked up in regular blood tests.

    Thank you for your blog but unfortunately and with all due respect, it's really not appropriate for those diagnosed correctly and your advice with restricted diets and exercise etc. could potentially cause harm to sufferers and in particular, children.

    I wish you well and sincerely hope you manage to find a treatable answer to your suffering rather than being stuck with a diagnosis of CFS.

    1. What is it about my appearance that suggests I don't have CFS?

  2. The World Health Organisation International Classification of Diseases marks CFS/ME as a neurological disorder, meaning that it definitely isn't a mental health issue. In fact, recent peer reviewed research by Griffith University identified the DNA issues and cell receptors which are responsible for the condition.

    Of course that's not to say that mental health and external stressors don't play a part in the severity of the condition at any given time. Depression is often an effect of chronic illness. Stress and emotional situations are known to affect CFS sufferers in similar ways to physical over-exertion due to the body's physical reaction to mental stimuli. It's important, however to note the distinction between mental health being the cause of an illness or a byproduct of it.

  3. Knowing Kelly the way I do, she does not have CFS, but does have mental issues. These issues are brought on by her own actions.

    1. Perhaps if you had 10% of Kelly's courage, you would not post anonymously, so we would all know the identity of this unpleasant troll.

  4. What's a crash?

  5. What's a crash?

  6. There is a lot of research going on around the world at the moment into M.E. There is so much more to be done, but at the moment it's all pointing in one direction and that is that it's a highly complex physical illness involving the metabolism and the immune system. Have a look at the work of Ron Davis in America or Fluge and Mella in Norway.

    Absolutely stress can exacerbate M.E - it does with mine. But it isn't the cause of it. Being 'highly strung' doesn't lead to paralysis, noise sensitivity, severe pain, nausea and the bizarre post exertional crashes which come with M.E. They happen because of massive systemic problems happening internally.

    I respect your right to blog about whatever you want and of course when you have an illness it's important to pick apart what's making you worse so you can limit the damage you might be doing to yourself. It's also really important to keep up with the research and write accurately about the condition, though, too. Writing 'is this a mental health condition?' isn't really appropriate when you're up to date with the science.

    Personally I try and keep my stress levels down, I try to eat well and being a complete perfectionist, I try to go very easy on myself and fight those tendencies. I'd be doing that even if I didn't have M.E. They aren't the reasons I'm ill though.

    A lot of people with M.E seem to have Joint Hypermobility syndrome, so based on what your physio noted with your elbows, it might be a diagnosis worth pursuing.

  7. What a very interesting blog this is! You ask very interesting questions, to which the answer even might be "yes" in your case. Reading your blog it wouldn't be a unlogical conclusion. Thank you for your insight and honesty. And for your courage to share this, as this is a very unpopular point of view...

  8. I've had CFS for 9 years. In my opinion it Should be renamed as DSYFUNCTIONAL CHRONIC FATIGUE SYNDROME. I also used to be a psychology teacher. Personally I think Depression occurs with ME/ Cfs but not cause it. I guess I think That some people have a predisposition /vulnerable to it. From my own experience and talking to people they all have two things in common. 1. They got the flu/stomach flu. And 2 their lives were out of balance. I was working a 50-55 hour week in a stressful job leaving me not much time for other things I needed. Others were working as Carers or had a very demanding family life with little time to themselves. More women have it than men and it might have to do with the roles they have i.e. Working mum. Wife Caring for relatives . Etc. I was under a lot of stress for months at a time. Prolonged stress lasting for months i.e. Work or revising for exams causes excess of adrenaline which affects /mucks up how we see and react to stressful events, conversations or depression. And the excess of adrenaline affects the immune system. When you have an argument with someone or are feeling anxious about something this causes more excess adrenaline and makes your symptoms worse! people who are also more likely to have CFS are often hard working and conscientious they made sure the job got done to the best of their ability (maybe at expense to their Heath.)

    I think it's both the mind and body that affects the immune system. And creates Cfs/me. I wouldn't want doctors to over simplify it and class it as a mental health issue because it's so complex & there are so many symptoms and in terms of treatment what works for some people my not work for everyone. I also wouldn't want the scientific research community to have a narrow focus as they need to be open minded.

    But You are right in the sense that certain personality traits & types make you more likely to have
    Certain mental illnesses. anorexia/bulimia are more likely in middle class girls who are perfectionists. Depression and anxiety disorders often occur together and people who are pessimistic are more likely to develop depression.

    For me The lightening process was really helpful.

  9. Forgot to ad that Me/cfs is an auto- immune disease (systemic malfunctions connected to stress)

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  20. Yes, it's a mental illness. If it can be cured by moving to a sunny country, it's a mindset. Not to say it isn't harder for people who are highly string, too-sensitive or expedient in their wiring, but it's not a physical ailment much as diabetes or lung disease.

    Mentally damaging, is the nationwide ( in the UK at least) encouragement of claiming the disease is worthwhile order. It's an excuse ( believe me I understand how this word will sting) to be lazy and stop doing things deemed unpleasant or hard. These involve cleaning, physical movement, or doing a single thing that is laborious.
    A sit in the sun, with all the washing and shopping done, with weeks of holiday ahead, and the suffering victim seems fine and starts getting "well".
    What a whitewash.


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