I am tired (an M.E. update)

no make up: i'm keepin' it real...

no make up: i’m keepin’ it real…

I don’t know where to start, so perhaps I shall say this: every single attempt to get the NHS to treat me for my M.E. feels like a battle. I hesitated about writing this post, but I figure that it is probably helpful for most people to get a snapshot of what it is like to have M.E. in the NHS.

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In March this year, I went to see my specialist. I had been waiting for eighteen months for an appointment, because they had for some reason marked my files as ‘archived’ instead of ‘active’. When I chased it up, (and it took several phonecalls), the most recent entry they had on my file was from 2008. It was a fight to even get to see my specialist.

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At the appointment, I took along a book which detailed over 250 pharmacological treatments for M.E., with an analysis of which doctors and countries were using them, which success rates they had, and the extent of the trials that had been conducted on them. Like any illness, some medications work for some people, and not for others. There were some that were low risk and the promise of some ‘help’ rather than ‘cure; there were others that had been dramatically curative for some, but had significant dangers of side effects. Really, after six years of having a considerably debilitating illness and being told I would improve if I stuck to pacing and resting – and deteriorating in spite of this – I just wanted him to pick one and prescribe it.

But that is a little tricky. First you have to find a specialist who believes in your illness. Astoundingly, the majority of those in the NHS who are called ‘CFS/ME specialists’ don’t believe that ME exists as a neurological illness. They believe you have Chronic Fatigue Syndrome, a largely psychological illness which they believe is caused by a mixture of physical deconditioning (lack of fitness) and exercise phobia or stress that is causing your reluctance to exercise. So they respond very sympathetically and tell you you have a ‘real illness’ (being careful not to say ‘physical’ or ‘organic’ or ‘neurological’ or ‘biomedical’), and that the cure is to exercise, and keep exercising even when you don’t feel well enough. That is the treatment I was initially prescribed, and it is the reason I went from being relatively well, to being in a wheelchair. I am not alone: in the biggest survey conducted among ME patients, only 22% said they were helped by Graded Exercise therapy, and over 50% said they were made worse, some (like me) permanently.

Fortunately, I have a specialist who does believe in the existence of ME as a neurological/autoimmune illness. Unfortunately, because the NICE guidelines (the policy of what doctors can or can’t prescribe in the NHS) were heavily influenced by psychiatrists who don’t believe in the existence of ME, the only treatments that are recommended are Graded Exercise Therapy (to increase your fitness) and Cognitive Behavioural Therapy (either to get over your supposed exercise phobia, or to help you come to terms with the severe limitations of the illness, depending on which philosophy that particular Occupational Therapist signs up to). These treatments are only recommended for mild or moderate ME; for severe ME there are no recommendations, only a few mild pain killers, and a whole list of medications they don’t recommend. I have severe ME.

So you either have someone who doesn’t believe in your illness who prescribes something that has a good chance of making you worse (and sometimes permanently disabled) or you have a specialist who does believe in your illness but is not allowed to prescribe anything for it.

He said that he couldn’t give me a drug for my ME, but if I had a different condition that required treating, then it may be that that drug would have a positive effect on my ME as a secondary bonus, depending on which drug it was. So we went hunting for possible other conditions that would mean I could have a drug that would be potentially effective as a treatment for my ME.

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I had a test – it came back outside of normal limits, but only just. (I had to phone up after three months to get the results – no one had told me of the results). My GP said she couldn’t interpret them, my specialist would have to do it. I phoned my specialist – he said before I could have a drug, I would have to have another test to rule out a different condition, and he couldn’t prescribe or arrange that test for me, my GP would have to, and she would need to arrange for a specific doctor to do that test because others in that department don’t believe that ME exists and would be exasperated that their time was being taken up by an ME patient.

I told my GP, who reluctantly agreed to do the referral. Another three months went by. I phoned up again to ask when I could expect the appointment with the referral doctor. After several phonecalls, it transpired that no one had made the referral. My GP was frustrated that my specialist wasn’t answering any of her letters, and she said that he should have done the referral in the first place. In the space of two days, both my GP and my specialist made a referral to have the additional test done – but my form didn’t go to the particular doctor, it went to the general department, who said it was a waste of their time and they didn’t deal with M.E.

****

It was now seven months since I saw my specialist, and I was back to where I started from. I phoned the CFS/ME service to ask if I were able to have another appointment with my specialist, because he had said I could have a follow-up appointment in six months, and I hadn’t heard anything. The lady said that there was a very long waiting list, and new patients were having to wait up to two years for an appointment, because the service is so under-funded. I cried.

A few days later she rang back with an ‘urgent’ appointment, in November, which will be eight months since I last saw him. I am in worse health than I was eight months ago. I am not getting better.

****

M.E. is an illness that is pushed to the bottom of the NHS queue, with only a few in the system even acknowledging its existence as an illness. These are the results of this:

I am battle-weary. I am tired of being my own doctor, tired of not having an advocate in the health system, tired of begging for appointments, tired of tearily pleading for someone to take my illness seriously and actually give me some sort of treatment plan.

I am tired of being told I have Chronic Fatigue Syndrome, when in fact I have Myalgic Encephalomyelitis, and I am not merely ‘chronically fatigued’: my symptoms include vertigo, chest pains, paralysis, tachycardia, an occasional inability to understand speech or to talk, burning muscular pain and shortness of breath. I am, however, chronically fatigued – which is to say long-term bone-weary-tired – of having to battle the system in order to attempt to get some kind of help.

I am tired of researching clinical trials and experimental treatments and alternative medicine.
I am tired of advocating for those who are even more ill than me, who are bedbound and in constant pain, and who are being denied benefits or treatment because apparently all they need to do to get better is get out of bed and do some exercise.
I am tired of writing letters of protest into the ether.
I am tired of researching private doctors and looking at their fees and wondering about their protocol and success rates.
I am tired of writing my book, which gives carers and friends an idea of what it is like to have ME.
I am tired.

This state of affairs is not okay, it should not be, and I need others to stand with me and say that it is not okay. I don’t really know what to do, but I just wanted to write and be honest about where I was at. Thank you for listening.

(I may be taking a little blog break for a week or so – the visit of my MP was great, but I overdid it, and this has triggered a big relapse, so I am trying to rest. I have an appointment with my specialist in a couple of weeks, and I am hoping that I will have some more answers then, but I fear I will not. Prayers from those who pray are appreciated.)

  • For more information on ME, go to Hummingbird Foundation for ME, and for latest research news, go to Phoenix Rising.
  • There is a new documentary, Canary in a Coal Mine being made in order to increase awareness: to read more and donate to this project please click here.
  • To help with badly-needed research: one of the best hopes of a cure for ME at the moment is a cancer drug called Rituximab, which has had very positive effects for severe sufferers in a small trial in Norway. To donate click here. (The government has not donated any money to fund this trial. They have, however, given money to a £1.25 million project to research Graded Exercise as a cure for M.E. in children.)

 

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109 Responses to I am tired (an M.E. update)

  1. Sarah 24th October, 2013 at 9:04 am #

    I identify only too well with your battle weariness and I am sorry to hear you are struggling so much at the moment. You are in the prayers of so many people including my own.

    With an illness like this can be hard enough to get through any given day let alone find strength to advocate for other patients. Once you take on an advocate role the obligation you feel to continue for the sake of others can feel overwhelming. Please don’t think for one moment though that your efforts have been fruitless.

    Wherever I go around the internet (whether blogs are by Christians or non-Christians, the healthy or the chronically ill) your name seems to crop up time and again. Reading your blog played a key role in convincing me to speak out about ME and not just leave it to other people. When I have become battle-weary myself posts to my inbox from this blog have convinced me to keep on going with my own when I was ready to quit. What you write has got so many people talking about ME. You are making more of a difference than you will probably ever know.

    • Liz Eph 24th October, 2013 at 9:20 am #

      i agree

      • Tanya 27th October, 2013 at 9:45 pm #

        Thanks, Liz! 🙂

    • Tanya 27th October, 2013 at 9:45 pm #

      Thank you so much for these wonderful words, Sarah. They are strength to my bones. I am really grateful for your comment.

  2. Lynn Kauppi 24th October, 2013 at 5:43 am #

    Hi Tanya

    Your post has truly confused me. I have fibromyalgia yet the fibromyalgia literature I’ve see seems to indicate that fibro, ME, and CFS all exist on a continuum of interrelated syndromes.
    Often fibro occurs after a traumatic injury or an infectious illness. Other times it seems to be genetic or occur for no seeming reason at all. This seems to overlap with similar causations for ME and CFS. Also I had a friend that once had juvenile CFS that cleared, as is the norm, after eighteen months or so. And, according to American criteria, there is a form of CFS caused by the Epstein-Barr virus.
    Truly baffling.
    The situation seems better in the US than in Europe. Here all the above diseases are no longer, at least according to the standard US diagnostic manual and the federal government, as purely psychological or “all in your head”. The problem has been getting individual physicians to accept that; this seems to be both generational (with younger physicians having been taught the new criteria) and regional. Fortunately both Arizona seems to be in a region that accepts the reality of these diseases and my health care is through a teaching hospital that has a formal affiliation with a local medical school so my physicians are aware of the criteria.
    From what I can tell by your blog, both your illness and mine (whatever they may be) seem to have taught and continue to teach us how to be more compassionate, to be more contemplative, to be more aware of simple joys, and further appreciate the complexities of the Christian faith.
    You are in my thoughts and prayers.

    Grace and peace

    Lynn

    • Tanya 26th October, 2013 at 9:20 pm #

      Hi Lynn – sorry for confusing you! As I understand it, although there are overlapping symptoms/features of ME and Fibromyalgia, the unique feature of FIbro is pain in specific regions/pressure points of the body, whereas the unique feature of ME is post-exertional neuroimmune exhaustion.

      In the US, the CDC renamed and redefined ME in the 1980s, basically saying that ME didn’t exist anymore, and it was CFS instead (but they changed the diagnostic criteria for CFS till it was so different to the ME diagnostic criteria that some of the doctors who had actually treated ME left the room in disgust). As a result, there are very few doctors in the US using the name ‘ME’ at all. Some use the name CFS and basically mean ME, some are starting to use and reclaim the name ME again. It is VERY confusing!

  3. Holly 24th October, 2013 at 5:33 am #

    Thank you for this post. The truth of the struggle should be told and you tell it with eloquence.

    • Tanya 26th October, 2013 at 9:15 pm #

      Thank you so much for encouraging me, Holly

  4. CECIL 24th October, 2013 at 1:00 am #

    i had a debilitating illness for several months in 1988 I got a M.E. and post viral diagnosis got cortisone tablets went from been like frankenstein to been able to move,the cortisone had side
    effects but got me moving and I was weened off them within three months I was ok.

    Speaking with immunologists now they say that was not me or post viral it was and I asked in 2012 for them to write it down guillain barre syndrome just a different perspective.

    • Tanya 26th October, 2013 at 9:15 pm #

      Thanks so much for sharing your story, Cecil – really helpful.

  5. Cathy 24th October, 2013 at 12:12 am #

    PS Even “keeping it real”, you’re beautiful!

    • Liz Eph 24th October, 2013 at 9:22 am #

      hear hear 🙂

    • Tanya 26th October, 2013 at 9:14 pm #

      Cathy and Liz – thanks!! 🙂

  6. Cathy 24th October, 2013 at 12:11 am #

    Tanya–
    Thank you for pouring out your heart and pain. May we help carry your burdens! Praying for you…

    • Tanya 26th October, 2013 at 9:13 pm #

      Thank you so much. This helps – it all helps.

  7. j 23rd October, 2013 at 11:21 pm #

    think theres a lot of generalisation in the negative aspects of this blog. There are lots of neurological illnesses out there where the medical word doesnt fully understand whats going on. ME/CFS is one of them. However that does not mean you cannot make progress with your illness. For me and my ME (i was professionaly diagnosed in june 2012) the illness is about morbid stress and then a viral trigger. This seems to unravel this bizarre onset scenario with headaches, dizzyness, nausea, that progressed over the months to more physical and cognative fatigue, anxiety issues and adreanline issues when resting (particulary at night), depression, tinnitus, various muscle aches and pains, a background weary flu like malaise etc… The key to recovery was lifestyle changes, medications for the mental symptoms (anti anxioltics) on demand meds for anxiety (diazepam), regular sleep patterns, complete medical sign off from work, stress avoidence, neurlogical and physical pacing, learning how to relax, some therapy to make me more aware when I am anxious and what to do about it…. Glad to say after about 2 years into this illness I am nearly recovered. The longest lasting of the symptoms is the bizzare night time adreanline vibrations wierd head when resting, but its all very minor now, I can exercise fully and am fitter than my pre ME days. For me ME/CFS etc etc whatever you wanna call it. Its about morbid stress that somehow disturbs our nervous system, the virus is probably relevent as a trigger or symptoms. I also believe a lot of the symptoms are caused by over sensitized immune response as a result of abnormal reactions to stress. why this happens I have no idea but I think part of the nervous system (HPA axis maybe?) gets disturbed or hypersensitized….

    • Charlotte Orth 24th October, 2013 at 12:18 am #

      I was interested in your story as this is the first time that I have seen tinnitus listed as a symptom of ME/CFS. In the US where I live it is more often called Fibromyalgia. My mother and one of my best friends have this. I have arthritis and tinnitus which my doc says is a symptom of my arthritis medication. Do you take any NSAIDS?
      I worked for years as a mental health therapist and never worked with one psychiatrist who believed ME is real! Yet, many of pts. who were referred for depression to me also had ME.

    • Liz Eph 24th October, 2013 at 9:15 am #

      dear j, i’m really glad you got better.

      1) this is the chicken and egg debate. does stress cause m e or does m e cause stress ? i think that like with the stomach ulcer discoveries, having made sufferers feel guilty for so long that they were making them selves ill they discovered it’s a bacteria and feeling stabbed in the stomach every time you eat causes huge stress, and of course too much stomach acid agravates the condition too but isn’t the cause. i’m certain one day they’ll finally get round to developping better blood tests and will find something similar for us.i suspect the fact that they sedated you quickly meant that your immune system had the time to recuperate quietly underneath. many of us weren’t so lucky and live with the lifelong consequences.

      2) i’m afraid that from my contacts in the me world m e sufferers, and tanya has even more, she is a very accurate spokesperson for us. her experience appears to be typical.

    • Tanya 26th October, 2013 at 9:01 pm #

      Hi J. Thanks for sharing your story. I am aware that many with the CFS/ME label have stress as a sustaining feature or indeed sometimes entirely the cause. For me, I haven’t noticed much difference between the times I am stressed and the times I’m not, it’s pretty much entirely how much physical exertion I do. Pacing and relaxation have been things that have helped (and seem to help most ME patients) and I’m so glad you were able to access medical care that treated your illness with those so quickly. I don’t know what my prognosis would have been had I been given that advice when I had it very mildly, instead of being advised to do Graded Exercise. This is rather my point: that every patient with ME deserves a proper, speedy diagnosis, and helpful treatment that deals with their specific illness, rather than being treated as though they had another illness entirely. I think it is possible to overestimate the role that stress has: stress probably plays a factor in the number of relapses in M.S., for example, and yet no one nowadays would say that M.S. is anything other than a debilitating neurological illness that deserves the very best research and care. That is what I would hope for ME patients, too – and what we have yet to see.

      • j 26th October, 2013 at 9:38 pm #

        Tanya, can I ask. Do you have problems sleeping now with your ME. Or do you go to bed at night and sleep easily after your head hits the pillow?

        • Tanya 27th October, 2013 at 10:17 pm #

          Why do you ask?

          • j 27th October, 2013 at 10:25 pm #

            out of interest really. And if you did have trouble, specifically understanding what stops you sleeping at night is important. Are you aware of a rising anxiety when you try and rest and your mind starts to surf?

            • Tanya 11th November, 2013 at 9:14 am #

              Sometimes I have a delay getting to sleep (usually when I have spent too long or too late looking at screens which decrease the melatonin production). Very occasionally, I experience the kind of anxiety you describe, if there is something particular I am stressed about, but this is a rare occurrence.

              We are not the same person, and our illness experience and causation seems to differ quite significantly.

  8. Deborah Penner 23rd October, 2013 at 11:19 pm #

    I wish with all of my heart I had something to offer that here in this moment of yours could wipe all of this away … I don’t. I only have my story {which isn’t yours}and what has worked me as I have fought for my body. It is presumptuous to assume that what has worked for me would automatically work for you.

    I have for the most part stayed out of the allopathic medical system … one which btw supported me for the 25 years I was able to work as an RN … I always knew however, that if something chronic and potentially debilitating occurred in my body, I would step outside of the system … whatever it took …

    Offering prayer and speaking grace and peace over your body … and over your entire being … Peace be still in Jesus name. Peace …. Peace …. Peace …

    Much love to you Tanya

    • Tanya 26th October, 2013 at 8:52 pm #

      Thank you so much for this wonderfully loving and respectful comment – I really appreciate it.

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