ME/CFS patients worldwide face scepticism and ignorance from doctors

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I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly we have all faced indifference and dismissal, or damaging medical advice at some part in our ME/CFS journey.

I personally suffered physical symptoms for years before being diagnosed and I know I am not alone. Evidence suggests that the sooner we get a diagnosis and correct treatment advice, the better chance we have of making a good recovery. But my personal experience, and that of many ME/CFS sufferers I have spoken to, paints a depressing picture. Not only are our symptoms dismissed by doctors, sometimes for years, but even after diagnosis we face scepticism, ignorance and dangerous treatment practices. This neglect is causing us harm. This has to change.

It still baffles me how some medical professionals can completely disregard a serious condition that has been recognised by the The World Health Organisation (WHO) as a neurological disorder since 1969.

With the huge amount of evidence available from a multitude of studies, isn’t it about time doctors were educated about ME/CFS and the seriousness of this illness?

So, I wanted to use this post to highlight the neglect and lack of education surrounding ME/CFS by detailing my own experiences with doctors over the years. I have included some of the direct comments I have received, which may sound shocking to some but all too familiar to others.

First up, a little bit about me:

My name is Jo Moss, I’m 44 years old, I live in Norwich (UK).

I was diagnosed with ME/CFS in 2006 but I had been ill for many years before that. Initially I was still mobile although ME/CFS had a huge detrimental impact on my life, but after years of bad treatment advice and my own ignorance surrounding the condition, my health continued to deteriorate.

I now have a severe form of ME/CFS which means I am confined to my bed due to severe fatigue, weakness and chronic pain, and I rely on carers and my husband for most things. There isn’t any aspect of my life that hasn’t been affected. I’m naturally a very sociable person, but I now live in isolation because interactions make me so ill.

My personal experiences with doctors

What I would like people, including doctors, to understand is; ME/CFS is a severe, complex and devastating neurological (not psychological) disease that affects every part of my body. I am in constant pain and feeling exhausted is my ‘normal’.

I have come in contact with many doctors over the years, both before diagnosis and after. Although a couple were both sympathetic and knowledgeable, the majority were dismissive, and uninformed about the disease I am living with.

Before being diagnosed with ME/CFS, my physical symptoms were dismissed for years as anxiety and depression, by numerous GPs. Doctors just kept prescribing antidepressants. Unsurprisingly they didn’t help, in fact the side effects made me a lot worse. No matter how many times I explained my physical symptoms, I was faced with the same incorrect diagnosis. Even after diagnosis I faced the same disbelief.

And the doctors that didn’t dismiss ME/CFS as “all in my head” were uneducated about the condition and how devastating it can be. They didn’t have a clue what to do with me, so they did nothing. Lack of education is a huge problem. Treatment options are limited to trying to manage the symptoms, but most doctors are unaware of the options available.

This problem is made worse when I have treatment for non ME/CFS related medical issues. Last year I was admitted to hospital with heart problems and the treatment from some doctors, and nurses, with regards to my ME/CFS symptoms was frustrating and damaging. They couldn’t fathom how a healthy looking 40 something couldn’t stand up or walk around the ward. And no matter how often I mentioned how hypersensitive I am to light and noise, and the pain it causes, this was not taken into account. One nurse tried to force me to sit up while she made my bed – even though I repeatedly told her I couldn’t.

I was under the supervision of an ME/CFS clinic when I was first diagnosed but I never saw a doctor, and I was just taught pacing. The depressing truth is; There is currently no specialist care services in my region for moderate to severely affected ME/CFS patients. I have been bed bound now for over 6 years, yet I have had no specialist medical supervision during this time. I am in constant pain and I rely on carers and my husband for most things – yet I get no treatment or guidance from any doctors. It’s very hard to be optimistic about my future.

Comments I’ve received from doctors;

Here are a few of the comments I have received from doctors about ME/CFS. There are many more I could include. Do any of these sound familiar? Have you received similar upsetting comments from doctors?

The following was said to me over the phone, by my GP after I was diagnosed with severe osteoporosis in my spine; “If you don’t get out of bed, you are going to die in that bed, sooner rather than later.” She insinuated that being confined to my bed was my choice rather than due to the debilitating symptoms of ME/CFS.

Another doctor exclaimed; Good news – you don’t have ME. You have PTSD” . This was after I already had an ME/CFS diagnosis from a specialist clinic.

One doctor told me to “sign up to a pilates class.” This was at a time when I was struggling to even sit up, let alone exercise.

Another doctor was extremely open about his scepticism, stating; “I don’t believe in ME – it doesn’t exist”

I was also told by one doctor that I was “sleeping too much” and this was causing my fatigue – not ME/CFS.

Education is desperately needed

Education is desperately needed along with funding for biomedical research. Although there is a huge amount of evidence available from a multitude of studies, proving that ME/CFS is a neurological condition, there are still so many medical professionals who believe it’s a mental disorder. Until a definitive test is established that confirms a diagnosis of ME/CFS, I fear this attitude will continue.

Finding a doctor that is both supportive and knowledgeable about ME/CFS, especially at the beginning of this illness, can mean the difference between a good recovery or years of worsening symptoms. Doctors attitudes and actions have the potential to change lives.

ME/CFS is not rare. It affects an estimated 15-30 million people worldwide, yet there has been minimal funding for biomedical research, and very little is taught about it in medical schools. With so many people affected by this disease isn’t about time research and education became a priority? All we, the ME/CFS community, want is fair treatment and a chance for a future.

What dismissive comments have you received from doctors about your chronic illness?

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  1. Jo, I’d like to say it’s hard to believe how people with ME/CFS are treated. But sadly, it’s not hard to believe. It’s so wrong. There’s a lack of knowledge and understanding. But also a severe lack of compassion.
    I hope that things can change.

  2. Hi Jo. I can really relate. I was diagnosed with ME at a specialist clinic 11 years ago but my GP still refers to my condition are ‘Chronic fatigue’ only once did a doctor say ME recently and that was a young student. I’ve also been told by GP’s that there is no such thing as ME it’s just depression, its just anxiety or I am sleeping too much. The last few years my sleep pattern has changed and instead of sleeping too much I’m sleeping far too little, but told it’s because I’m not exercising enough and to ‘push’ myself more. They don’t understand about PEM and have never even tested me for POTS etc. I was referred to a psychiatric clinic many years ago and told I had PTSD amongst other thing’s, and they failed to understand about anything about ME and why I can’t tolerate anti depressants. I have been made to feel like a time waster, hypochondriac and told I have a ‘tendency to worry’ whenever I bring up any symptoms. I am going into hospital for major surgery and dreading the noise, lights, routine, and most likely total lack of understanding from Doctors and nurses. I know I am far from alone with any of the lack of support, help and understanding from the medical profession, but rather, like yourself sadly just one of thousands treated as second class citizens here in the UK alone.

    1. I’m sorry to hear you face the same scepticism and ignorance. I hope all the awareness campaigning that has been going on over the past couple of years, and the new research into ME, will change perceptions. I’m not sure if you have seen it yet but I’m featured in this Daily Mail article that was published today. Hopefully it will bring awareness to a wider audience. Take care.

      1. Well done Jo for being part of this article. Thank you for doing so much to help raise awareness.

    2. Could you maybe ask which ward you’re going to be in, and give them a visit and explain your circumstances? Problem is, if there are no single rooms, then you’re stuck in a ward. I had a meltdown in the ward when I was in hospital. I’d TOLD them my conditions, but none of the nurses had read my notes?! I was refused a sleeping pill, lay awake almost the entire night, and just as I was dropping off, all the lights went on, 6 nurses in the room, noise, curtains round the beds scraped back etc. I was sobbing before I even realised why I was crying! Didn’t realise at the time that the lack of sleep plus noise/lights had set off my sensitivities. They didn’t have all my meds either, so make sure to take any you are on with you, just in case! They refused to give me mine at my regular time too, so having my own brought in really helped with that. Hope everything goes well for you!

  3. I was diagnosed, in hospital, with CFS in 2005, and subsequently this diagnosis was re-confirmed at another NHS Hospital ME/CFS clinic. Yet every time I see a specialist in another area of medicine, they alter my diagnosis to “Chronic Fatigue” without any discussion with me, and I have to write to my GP to correct it. I cannot understand such arrogance. Apart from anything else it is entirely dismissive of their colleagues who diagnosed CFS. As you will know, Chronic Fatigue can occur with any chronic illness and just means you have fatigue which doesn’t go away. ME/CFS is different and comes with specific symptoms additional to fatigue.

    The lack of knowledge is unforgivable.

    I have also had a surgeon tell me, on my requesting that the nursing staff should know I have CFS, just before the operation, that there is no such condition. Again, total dismissal, no discussion, said with utterly dismissive venom. I nearly died after the op. and needed two blood transfusions and the surgeon apologised.

    The whole thing drives me nuts. And angry.

  4. Hi Jo, thanks for sharing your journey with ME/CFS.
    I was diagnosed in January 2013 by Dr Jean Bailey who was a specialist in this field. I was living in Oxford at the time and there were support groups and meetings which made so much difference to my mental health and physical well being. I was a person with a real condition, a disability.
    I have an appointment in December with Pain Self Management, (I was referred in July) whatever that is, we all self manage our pain, our frustrations, our mental health our disabilities.
    I don’t hold out for much, there will be the scepticism and disrespect that is now the norm for this “invisible disability”.

  5. I was diagnosed at a m.e clinic in Gorleston Norfolk by a Consultant specialist who told me I have m.e. this was in 2005 although it started on the 15th February 2000. I was pushed constantly between neurologist and psychiatrist for six years before a new Dr I had said, if my bloods come back clear then I have m.e they did but she backtracked for some reason, wasn’t until a visiting locum gp asked why i hadn’t been referred to the m.e services , literally within the month id seen the consultant.
    My m.e continued to get worse every time I had a relapse but not a single Dr after I moved from that surgery appeared to not understand or even recognise m.e . By the time I’d had m.e for ten long years I was severe and was diagnosed with severe m.e , no help from anywhere just left to get on with it , it wasn’t until I had it for fifteen years that I was bedridden in a hospital bed with an electric mattress for four years that i had help from carers but it was useless as they would turn up at the time they were told to come by the company they worked for and expected me to get up for a shower even though I couldn’t get out of bed , and I was expected to go to the loo or use a commode by my bed when they came three times a day, I said I can’t just want to go when you are here I can’t do it to order, and times I’d already just been before they came when my husband helped me who was my full-time carer, in the end I had to stop it cos I was fed up with carers coming in not knowing what m.e was and saying they didn’t know why they were here as I could wash myself etc, or they’d say there’s nothing wrong with you your young I’ve just been to a ninety old woman and she can do more than you do why can’t you wash or shower yourself , some were just very very rough washing me.
    What little support I had from m.e clinic stopped when I became severe too I also had to fight hard to get a gp to do home visits, they would say no you live just round corner you can get here, and we only go out to old people ! I said well in that case I will call an ambulance, after a few times of calling an ambulance they suddenly changed their minds and would do home visits but I still got asked are you sure you can’t come to the surgery!!!
    We are between two hospitals where I live near thetford Norfolk so we often get a choice either West Suffolk in bury st Edmunds or Kings Lynn, after my experience of the two I always say bury cos they are so understanding of m.e they even once found me a room to lay down in while I waited for the Dr to see me in outpatients department. Lynn by contrast was a different matter! I was taken by ambulance to hospital to a and e now I can’t have my legs flat on bed as it’s agony so after a while I was in tears so I asked my husband to ask nurse for a pillow , he found the sister of a and e and asked her for a pillow she asked why do he told her, she turned round and said I am very short of pillows even if I had one I wouldn’t let her have one she doesn’t need it . Then while my husband went to get my wheelchair out of the car the same sister came to move me, she asked me to get up and walk round to other side of the department, I said no sorry I can’t she said well how do you get about at home so I said with a wheelchair or my sticks depending on how bad I am or it’s often I don’t get out , she made a huffing noise and pushed me on the bed I could tell she wAs furious with me. Now I won’t go there if I can help it
    But on the ward I was out on that time they treated me very well they would get me in my wheelchair every time I needed the loo or being a commode to my bed , they even got me an electric mattress for my added comfort and as they don’t use blanket cradles anymore they would roll blankets up for me and put under my knees.
    I had one psychiatrist say to me you DON’T need that wheelchair I want you out of it next time you come , but I didn’t , he would get really angry cos I was using it saying it’s in my head thinking I can’t walk but there’s no physical reason you can’t do get out of it!!! Many months later I one day walked into his office with crutches I’d really tried hard to do it and knew I’d suffer afterwards but THAT still wasn’t good enough for him , he still insisted I didn’t even need them as it was in my head….. I moved shortly afterwards and never saw him again , but I honestly believe he was the one who pushed me into having a disability, as I listened to him and pushed and pushed myself SO much as I started to think ok it must be in my head cos he was high up in his field work that he must be right and know what he’s talking about .
    So I’m convinced he was the one that did this to me and ruined my life ……

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