Not Waving but Drowning

This week Tynwald will have a general debate on ME (Myalgic Encephalomyelitis). And today at 1.30pm, M.E. sufferers will be demonstrating outside Tynwald calling for better recognition of and treatment for the condition. 

To further highlight this condition, several M.E. sufferers have shared their experiences with Gef not only of the difficulty in getting diagnosed, but also how they are supported once a diagnosis has been confirmed. The contributions were collected by Craig Morris, Vice President of M.E. Support Isle of Man.

The Hummingbird Foundation: ‘The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.’

1. The fatigue of ME is difficult to describe to someone who hasn’t experienced it… The title Chronic Fatigue Syndrome is as ridiculous as if Crohns disease were to be renamed Chronic Tummy Ache. It does all ME sufferers a disservice, and I prefer to use the name ME. 

A family member told my husband that when she went through the menopause she felt the same tiredness. She didn’t. And this meant that whenever I tried to talk to my husband about how worried I was he would state “Menopause!” I started going through the menopause about some months ago – it wasn’t that. And this attitude is something I have found really common in how people respond to ME sufferers – I don’t know if they are trying to make us feel better, or themselves feel better but it is actually quite dismissive. I can assure you I would rather have anything other than ME. My parents’ response of “we get tired too” or my son’s belief that if I only exercised and ate the right food that I would heal myself. And this is the response from the people I am closest to and love the most. When my husband got cancer, I was a little jealous that he had something believable and treatable, as indeed it was. 

What’s the treatment for ME? The answer was pretty much nothing, we don’t do anything, there is no treatment. My hopes were smashed. I am very grateful for what the Dr then said. “It used to be advised that Graded Exercise Therapy and Cognitive Behaviour Therapy were treatments, but they are moving away from that now as it can do more harm than good.” 

We have several hundred sufferers on the Isle of Man, and around 250,000 in the UK. I would expect this to rise significantly following Covid 19, as my illness like many others was triggered by a virus. 

2. My GP wanted to help, but couldn’t 

Around 3 months after I became seriously unwell, unable to take any part in normal life, I had an appointment with my GP. My diagnosis was clear and the doctor clearly understood and sympathised with my situation, but at that moment I felt so hopeless. We had discussed my options and seemingly there were none! My life had been ripped apart shortly after my 30th birthday and I had so much to be grateful for before my health deteriorated. I couldn’t understand how the system could abandon me. 

I was fortunate to find support and guidance from a private clinic in the UK, although the process of obtaining this advice was gruelling and the travel involved undoubtedly caused further damage to my health. We ultimately resorted to internet searches to find help and I was reliant on my family to research this as I didn’t have enough energy. I think we were lucky to find a competent and experienced specialist and I know others with my condition were less fortunate when seeking out support in the UK. 

Having received good quality advice, I know how easy it would be to empower GPs with just enough knowledge to intervene more decisively. 

3. It took ten months to fight for a diagnosis and inappropriate advice seriously harmed me to the extent I may never be able to live independently. 

I knew immediately I was very seriously ill but it took ten months to fight for a diagnosis and appropriate medical advice and in the meantime I had fallen through the cracks and inappropriate advice had seriously harmed me to the point I may never be able to live independently. A decade later I remain very severely affected. I still struggle to move and talk and even the smallest physical, mental or emotional effort can drain me for days, hours or longer and the consequences can last days, weeks or months. What’s most horrifying is that people today are still being given the same advice that harmed me ten years ago. My GPs said they knew nothing, could do nothing and told me to look for information on the internet and go away. 

4. I can’t get support without an official diagnosis!!! 

My Dr did blood tests and said we’d take it from there. I am still waiting!!! Without an official diagnosis it is difficult to get any support. I need an official diagnosis to ensure I get the support I need. 

5. Educating clinicians is key (from a former DHSC employee). 

Before ME, I used to work for the DHSC. I mention this because I wish to acknowledge the previous limitations of my own knowledge as a health professional about M.E. and believe that education for our clinicians is a key part of how we move forward. 

It took approximately 18 months from being too unwell to continue in work to receiving my diagnosis. During this time I tried standard practices for improving my health (including exercise which led to further deterioration in my health). 

The Liverpool Chronic Fatigue Service has helped me to stabilise my health to some degree, but not before ending my career of 30 plus years and leaving me living a small fraction of my previous life. 

6. I thought friends and teachers would understand when I got a diagnosis of ME but I was wrong. Things got worse. 

All of my joints were aching, my hair was falling out and 3 or 4 times a week I would be off school ill with crippling migraines. For a year, I was in and out of hospital undergoing tests for arthritis, tumours, thyroid disease and more. I felt as though I was making it all up in my head. There was no explanation for the way I was feeling and to make matters worse, I couldn’t explain to my teachers why I was absent! I missed school so often it resulted in many sarcastic comments about the number of times I had missed lessons. 

Just after I turned 13, my paediatrician finally diagnosed me with ME (or Chronic Fatigue Syndrome as he called it). I thought that I could finally begin to move on and that the comments from teachers and my friends would stop. I was wrong. As I began to study for my GCSE’s, things got worse and I felt even more exhausted than ever before. 

After spending a long period of time absent from school, I would go back to be tormented and accused of ‘skiving’ – all because I didn’t look physically ill. This was difficult and really took its toll on my usually positive attitude. Without support, I often felt alone and wanted to give up. 

7. No help, no guidance, just a diagnosis and a referral to a physio and then I was investigated and made to feel I wasn’t doing right by my son. 

No help, no guidance, just a diagnosis and a referral to a physio… As a carer I was investigated, I was challenged, I was made to feel like I was not doing right by my son. I was made to feel like I was a failure by professionals that should have been helping the family and my son… He was given leave from schooling. His friends by now had all gone, they were enjoying life, playing , securing bonds that will last a lifetime. My son’s life was now very much based in one room. His life was solitude. 

As a carer, I would cry tears in private, tears off lost time, lost friendships, lost life. I had now given up working as my son’s needs were so significant a full-time carer was needed. I found myself lost to a world of caring, seeing a loved one’s life being destroyed by an illness that has no cure. My tears of sadness flowed more freely as now I was seeing the destruction of my child slowly destroy me inside. I felt like a failure as a mother and a provider to my family. He was now sleeping 18-20 hours daily. His body frame was like a skeleton, his bones hurt, he struggled to hold his head up as pain would take over. 

In the last 6 months, my son has managed three thirty minute lessons in all that time. His illness has stripped him of basics that most take for granted. 

8. I was treated for a mental health problem but after a year of getting nowhere with talking treatment it became apparent that I had ME. Further talking treatments for this failed and experimental diets have not been successful. 

I spend most hours of most days in bed. I wake in pain and nausea which may remain throughout the day or may come and go. Sometimes I cannot follow conversations, or understand instructions, or even speak. My body randomly shakes. I am always exhausted, and need long rests after every meal and before and after any small activity. I cannot walk very far or stay upright for very long. I have lost a large amount of weight and I feel really sick most days. In short, I feel I have the body of a very old and ill lady, not a young woman. 

My friends gave up on me; they thought I was making this all up, so I became isolated. My parents didn’t know what was happening, and as more strange and horrible symptoms arrived, we were desperate to find out was happening. Initially I was treated for a mental health problem, but after a year of getting nowhere with talking treatments, it became apparent to the that this was not the issue and that I had ME. Further talking treatments for this failed and experimental diets have not been successful. 

9. I’ve had ME for twenty years but my blue badge – a lifeline – was taken away because my new GP said ME was temporary 

My M.E. story began nearly twenty years ago and the initial experience was similar to many others – i.e. being told that there was nothing physically wrong and that I should think about seeing a psychiatrist! 

Needless to say, I felt insulted and contrary to what I was being told, I knew my own body and I knew that there was definitely something wrong. I had been an active and athletic person and I knew that things were definitely not all in my mind. 

I spent most days in bed. Climbing the stairs was only possible on all fours. Pain was so severe it made me cry out, but could not be eased with even strong painkillers. Those early days were full of fear. I now had no job and no family. Friends had just faded away. I had no social life and was struggling to come to terms with the fact that there was no longer anyone left who knew what sort of a person I was before the M.E. It was 

as if the person that I had become, on the outside, was not up to the task of representing the real me, who was still on the inside. I was overwhelmed by such a sense of low self worth. 

Funding was found for some support from the specialist ME centre at Glasgow Hospital but then rescinded and I found myself with a different GP. This ‘new’ GP refused to sanction my Blue Badge renewal because, as he informed Social Services, “M.E. was just a temporary illness”. 

10. My GP didn’t believe me, was reluctant to do tests and seeing them and having to deal with such scepticism meant I gave up going. Visiting my GP was pointless. 

I went to see my GP only to be greeted with a negative unbelieving attitude and a reluctance to do blood tests. The tests all came back as ‘normal’ which was both disappointing and frustrating. Suffering as we do is NOT normal even if scientists haven’t invented the right blood test yet. This turned out to be the first of many pointless visits to my GP that I soon gave up trying to get answers and decided it was up to me to get better by myself. Trying to do that without a diagnosis is like the proverbial needle in a haystack it will take a lot of searching… 

11. I’d have fallen through the cracks if I hadn’t been able to pay for UK private advice. There’s no local help available which traps people because ME makes most too sick to work. 

In 2012 I became very ill. I missed 3 months of work and went to my GP. They did blood tests and referred me to specialists at my request. Over the next three years I met with a cardiologist, a neurologist and a cognitive behavior therapist. I also had an MRI and an ultrasound. After finding nothing and no guidance from my GP on how to manage my symptoms. I did my own research and requested referral to a “chronic fatigue specialist” in London (on private healthcare). At this appointment I received my formal diagnosis. However as we do not have an M.E. support service, they could not refer me to anyone locally to help me. Since then I have also visited the M.E. clinic in Liverpool but I received the same answer. Therefore I have managed my own condition ever since. My condition has been moderate for the past few years as I have learned how to cope. I work a full time job but I often reduce my hours or take time off. 

12. My partner’s OT recently asked had my GP referred me to the Fatigue Clinic. I didn’t know of its existence! There has been absolutely no support whatsoever for me. 

My condition has now greatly deteriorated over the last 18 months. So much so that I can no longer go out alone and I am now really struggling. I truly hate to let people down, but the Manx NHS is doing precisely that to a great many patients. 

The last time I managed to go for a walk on the prom was Good Friday 2020, aided by my partner. I didn’t walk too far, but it took me over an hour to walk home as I had to keep stopping to rest. It is now a struggle to shower every few days and if I am lucky enough I may find the energy to even clean my teeth. 

All I have had to eat so far today is some mushroom soup in a mug, because I haven’t had enough energy to sit up, cut up the food, chew it and then find yet more energy just to swallow it! I threw up shortly afterwards because of exhaustion. 

13. After initial diagnosis, my GP said look it up yourself for info. He said if he had an answer / cure, he wouldn’t be working in the surgery. 

After eventual ME/CFS diagnosis, I was referred to the ME Clinic at Nobles. After a couple of visits, this closed down as one of the staff was leaving. 

When the Assessor for DLA (Disability Living Allowance) visited my home to assess my level of disability, he had no understanding of the condition. He asked me to do certain things such as go for a short (40m) walk with him, during which I stopped to rest twice. The energy expended to do all that wiped me out for a week (needing spoon feeding mushed food levels of energy) but he declared I was mobile and needed minimal care. My parents had to document my status / condition for a week and use it to appeal to the government in order to get DLA reinstated. 

Despite being 30 years of age, I have to live at home where my parents care for me, yet I cannot pay them any rent; but if I was improved enough to have a place of my own with assistance, the rent would be paid for. 

It seems the whole medical and government understanding and consideration for ME/CFS victims is severely misaligned with the actual needs of those victims. Personally, I feel pretty much abandoned by the system and left to my own meagre devices. (Typed by Dad because brain doesn’t work anymore) 

14. This horrendous situation was completely avoidable 

Living a fulfilling and stimulating life with a challenging career and an active lifestyle, including adventurous foreign holidays and many sporting activities, life was suddenly transformed over the course of 6 to 8 weeks. I became completely incapacitated, housebound, struggling to talk or even watch TV and unable to shop or cook for myself. 

What has made the whole experience so much more galling/ heart wrenching/ incomprehensible/ chastening, is learning from my UK based specialist, that this horrendous situation was completely avoidable. The illness stemmed from an earlier viral infection, a few years previous, which required around 12 months for a full recovery and involved a significant number of GP appointments at the time. The shocking thing we have learnt is that my GP should have advised me that there was a risk of this situation arising, with chronic debilitating fatigue a possibility later in life. The risk can be easily mitigated with straightforward steps to monitor energy levels and the sacrifices that would have been required to manage my lifestyle to avoid severe ME developing would have been very minor and barely noticeable. 

Unfortunately, my life has been unimaginably damaged by a GP’s failure to convey this very basic and fundamental information about post-viral fatigue. 

15. I was on the verge of a successful recovery, but fell through the cracks 

I contracted Epstein Barr Virus and was unable to work for around 4 weeks. I returned to my desk job, with relative success, but my physical energy levels were severely limited and so I was very careful not to return to sport or my usual physical activities. Despite being careful, I triggered a deterioration in my condition after going out for a walk in the Manx countryside. I was very active before my viral infection, so at the time this seemed a suitable stepping stone in my recovery. 

It took around 7 months to recover from that gentle walk! I still can’t understand why GPs refuse to give more detailed advice for post-viral fatigue. It is a minefield for patients and now I understand the condition, I think it is criminal that patients aren’t told how to protect themselves in the early stages. GPs could very easily reduce the number of severe ME/CFS cases. 

16. Looking after my 2 children was so difficult and working became a distant memory which still is a source of depression and lack of pride. I am less physically capable than my Grandma who is in her 90s. 

I feel like I’ve been very quickly passed over and brushed off. Chronic pain is not a small thing. In my early 30s I struggle to open bottles, to shower, to get out of bed, and I’m mentally very strong and capable so to be disregarded by the only people that can medically help me feels so unbelievably hopeless. 

I still know very little about my illness, I don’t know what brought it on, how to manage it, if specific diets help, if I can have any mental help to get over the notion that my life will never be as full as I’d have hoped it would and there are some days I am less physically capable than my Grandma who is in her 90s. 

Please look at the limited help offered as if it’s needed for yourself or your child. Please do more to support people who wish they didn’t need help but do and to raise awareness on the island as it physically and mentally breaks a person down and if we can at least be understood and helped that would make our lives so much easier. 

17. I have stopped going to see my Dr as I leave crestfallen as nothing changes. I wanted to be referred to neurology but wasn’t. It’s a long lonely road. 

I haven’t worked for a few years, it became impossible, and now live on benefits. Trying to manage is hard, and I have a simple life, everything is going up, income stays the same, this is a big worry for me. 

18. It took 26 years before I finally got a diagnosis of ME/CFS and I was only able to teach full time for two of those years! 

Despite my own enormous efforts to get well, I have only managed to work full time for 2 out of the 25+ years that I have been teaching. My career has been permanently blighted by my illness and I had to admit defeat and give up my vocation 18 months ago. I now survive on my disability living allowance and incapacity benefit. The talent you invested in over my whole career, now left to rot … 

I learnt to hide in the shadow of my life but no longer. It is time for our voices to be heard and our needs met. Please do something to stop the wasteful decay of people’s lives who could be contributing so much to our wonderful Manx society. 

19. I gave up and just said ok. I walked out into my car and broke down crying! It was like no one was listening to me, I wanted to get better but everything suggested seemed impossible with how ill I was feeling. 

I knew something wasn’t right but it was like everytime I went to the doctors they would send me for blood tests, all would come back ok and they would just shrug and have no answers. I was on the verge of having to quit my job… It was a new doctor I was seeing and she finally agreed that it was likely to be M.E/CFS! Finally. 

I got signed off as I just didn’t know what to do, how would I financially support myself if I gave up work? How would I look after my son who I had sole custody of? What quality of life could I actually have? The questions were endless and no answers could be provided! 

A different Dr was very rude to me when I said I was diagnosed with M.E! In fact he laughed and said ‘who told you that?’. He then went on to say it probably wasn’t and was more than likely because I’m fat. I struggle with eating healthy because very often don’t have the energy to cook meals, it’s quick easy meals thrown in the oven! He turned to me and said that’s easy, just eat less! Then I explained when I try to eat less I feel really ill, very light headed, less energy and really can’t concentrate, to which he replied ‘yes, that’s called dieting’ I gave up and just said ok. I walked out into my car and broke down crying! It was like no one was listening to me, I wanted to get better but everything suggested seemed impossible with how ill I was feeling. 

[This patient pointed out that acupuncture has really helped them and is routinely available for those which chronic conditions thanks to the Australian NHS] 

20. It became a bit of a ping-pong match, where my GP would refer me to Occupational Health, who would then refer me back to my GP. Since that time, both CBT and GET have been shown to have a detrimental effect on sufferers of ME/CFS. 

1. November 2003 – illness begins after a severe flu-like viral infection. 

2. Symptoms progress to chronic fatigue to the stage of being unable to get out of bed and needing help with eating, drinking and toileting. Not able to work. 

3. GP sympathetic but unable to help. Nowhere to be referred to and no suitable medication 4. Referred to IOM Government Occupational Therapy Department (through work). Similar response; sympathetic but no help available. 

5. Advised to do my own research into Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET); no local support available or offered for either. 

6. Using trial and error, diet and lifestyle changes, a slow incremental progress was made over a period of two years, before being at the stage of living something close to a normal lifestyle, although ME/CFS never fully leaves you, and you must live a careful, measured and restrained modified lifestyle to remain healthy. 

7. Late 2016 – following a prolonged viral type of flu with chest infection, relapsed into full blown ME/CFS again. Unable to work. Housebound for a lengthy period with very restricted lifestyle. Vertigo / dizziness a particular issue this time, meaning I was unable to walk without a stick for balance support. 

8. Once again, GP’s and Occupational Health Department offered no referral or help other than ‘tea and sympathy’. One GP tried to convince me I was suffering depression (I was not) and actually prescribed Sertraline – a strong anti-depressant (which I never took). Occupational Health advice was that my CFS would likely continue unchanged for the foreseeable future and from a medical point of view I would effectively have to learn to live with it. 

9. In frustration at getting no active support from the IOM Health Service, I undertook my own research and attended a specialist clinic in London, at my own expense. 

10. I underwent a series of in-depth blood tests and consultations and was given a radical regime of nutrition, functional medicine, and naturopathy. For the first time I felt that someone was truly listening to my health problems, understanding them, and prescribing me an effective resolution, something that had not been, and is still not, available in the Isle of Man Health Service. 

11. My own health quickly recovered to the point that I once again, to all intents and purposes, lead a normal life. It has cost me many thousands of pounds, and continues to have regular expenses, but what price do you put on good health? 

12. That said, ME/CFS, in my experience, never fully leaves you, and part of my ongoing treatment is to recognise the warning signs preceding dips in relatively good health, and I live a careful, measured, and restrained lifestyle, with a restricted diet, on a permanent basis. 

21. We need a domiciliary service so the sickest are not excluded and lying down transport 

Could we make Nobles a less hostile environment for people with ME? Having spent 30 sleepless hours there, I was ready to go and die in a ditch. 

I’ve been bed bound for 12 days after going 10-15 minutes in the car. 

In the 30+ yrs of my illness, recognition of the illness has gotten worse. I was diagnosed by my GP within 2 months and by 2 top London hospitals within 4 months. 

I’d intended to write a really long thesis about my 30+ yrs with ME but then had it so bad for 2 weeks I couldn’t even dictate! 

22. I have no life… The understanding of ME over here is zero. 

I have no life apart from work. As when I get home all I do is sleep. I rarely go out at weekends, and if I do it is often to go to school to catch up on marking. People do not understand this illness. It is so frustrating! 

I am still struggling each day to function as a normal human being.I am in pain, I tired so easily. Some days I don’t even want to get up. I went to Liverpool for the sessions at Broadgreen. To be honest, they were useless. I feel like I have got the energy and strength of a gnat, but the zest of a lion. It is not easy – actually it’s really difficult to keep going, especially when people don’t understand the illness and lack of energy. It’s a lot more than tiredness. It’s an unseen battle that no one sees! 

I have asked for workplace adjustments and instead of reducing my load my line manager gave me extra work and told me to quit if I wasn’t well enough to do the job. The understanding of M.E. over here is zero. I want to give up, but my pride won’t let me. But I am in pain. The G.P.’s are useless.

23 – I spend the majority of my time alone. 

I was lucky because my Dr knew this thing wasn’t in my head. Because she was respected, my interview with the Government Doctor after 5 years on Invalidity Benefit was not as difficult as it might have been. He didn’t accept that ME was a physical illness, but respected my doctor. 

I went through a period of stress at work and my employment was terminated. This triggered a relapse of ME. At this time I had suicidal thoughts only dispersed by the need to look after my dogs. I have been housebound much of the time. Only able to leave the house to go to doctor and dentist appointments and that’s with resting before and after. 

I have been ignored by the Consultant when I went to A & E due to dizziness because I mentioned my ME diagnosis and I was treated as if I was hypochondriac by the doctor who wrote the form which released me. 

I was first diagnosed in 1989 and was relieved to go into remission for 16 years. Since my relapse in 2009 I have been only able to function at 30% for coming up to 12 years. 

I am lucky because my doctors have supported me. As have my family. I have one good friend who has seen the full spectrum of my difficulties. But I spend the majority of my time alone. 

24 – I just want people to listen and understand how hard it is…They say to work within your energy then send you to Douglas for treatment! 

We need someone to make all this easier instead of the constant battle. I just want people to listen and understand how hard it is. 

I wish family would understand too. They seem to but then don’t. They seem to get it on the surface but not deep down. That can be very upsetting and it gets so frustrating sometimes. 

I know I need to rest more but I feel so guilty and frustrated. And we’ve just had to move to somewhere without stairs so it’s easier for me to move around. I’m doing too much but when I do less I never get it back. And we are still unpacking boxes… 

They say to work within your energy then send you to Douglas for treatment! I lived near Andreas at that point and the drive was too much 

I’d really like access to occupational therapy and telephone support for medical issues. 9

25 – Those are some of the things I’ve had to deal with over the years but to be honest I avoid doctors now as I feel they never do much to help 

Being housebound often cannot get access to medical care as not able to get home visits. GP told me to come in for blood appointments so that ” I’m making an effort”. 

One GP a few years back told me not to come back with my wheelchair as I shouldn’t be using one. Needless to say I never went to him again and got the ME Association to write to him too. 

Medical certificates are difficult as is continually having to refill-in benefit renewals when sick long term. Have to go and physically see a GP before they will issue a sick note yet nothing has changed and sick notes could be longer term or preferably issued as sick until say otherwise… 

Other things I’ve had over the years from a different GP was that I’d been left to turn into a cabbage and that ME doesn’t exist. 

I wasn’t able to access a NHS wheelchair as was told I wasn’t eligible so had to source my own. 

Those are some of the things I’ve had to deal with over the years but to be honest I avoid doctors now as I feel they never do much to help. 

26 – ME is chronic fatigue with pain and Fibromyalgia is chronic pain with fatigue 

I have pain in muscles that I never knew existed. The pain from any slightest knock can feel ten times worse. When I’ve been busy in the daytime, I struggle to sleep because the pain is overbearing. After I have struggled to sleep I feel extremely fatigued. I struggle with concentration. I struggle with getting words out, which sounds like a stammer.I suffer with depression and anxiety. 

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