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.

****

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.

****

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.

****

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.)

 

, , , , ,

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

  1. carole heath 29th March, 2019 at 10:30 am #

    I had a bad experience in august I was badly bitten by mosquitos unfortunately I had an allergic reaction very sore red bites and a swollen leg. I was given anti-septic cream and antihistamines. The bites took ages to go. In the October I began to feel unwell dizzyness shakes and a panic like feeling which i put down to panic attacks. A week before Xmas ? I contracted a bad virus. I went to my gp twice and I told her about the awlful tiredness. The gp said it was post viral fatigue and in time in would go. I had some blood tests and it showed up low vitamin d levels which I take a supplement for now. And I had had skeeter syndrome a bad allergic reaction to mosquito bites. 6 months or more down the line I feel better but the fatigue is still with me at times. i feel foggy brained lightheaded. I used to do lots of long walks with my dog but if I over do it now i feel unwell. So I just pace myself now and take each day as it comes.my gp said I will eventually feel ok again but it may take another 6 months.don’t stress yourself out doing things you are not happy doing it adds to your anxiety.

  2. Rachel - Cheering From The Sidelines 30th September, 2014 at 11:45 pm #

    Hi Tanya, I realise this is an old post, but I just stumbled across your blog tonight and had to respond. I’m not really sure what I want to say tho! I guess just to let you know you’re not alone. I am in this system too and feel exactly the same way you do! Only this evening I sent yet another email to yet another specialist, begging for help. But no-one seems to cater for severe ME patients, no-one will visit me at home (even paying privately), and I am now faced with trying to find the safest way possible of travelling to see a consultant, when I haven’t even been able to go downstairs for nearly six months!

    I hope you have had more success with getting help from the medical profession, or if not, that you have been able to find some peace about it.

    I have been considering writing a blog post about this very issue, but haven’t got further than a possible title/theme (‘I’m going on a doctor hunt; I’m not scared – well actually yes I am…’). What you have written expresses and explains exactly what I wanted to say; would you mind if I reblogged part of your post, with full credit to you and a link to your site to read the rest of the post? (PLEASE feel free to say no – there’s no pressure!)

    Anyway, I’m so happy to have found your blog, and I look forward to reading more.

    Bless you x

    • Tanya 3rd October, 2014 at 10:39 am #

      Urgh. I feel for you so much in the panicked search for specialists. I’m at a plateau at the moment, so I’m feeling fairly safe from the clutches of unhelpful doctors, but I know how scary it is to be needing a helpful doctor, and finding that there aren’t any. I’ve just been diagnosed with another related condition to ME, and the response I’m getting from this doctor is so different from what I get from ME doctors. It’s crazy.

      I heard that Dr Derek Enlander was coming to Ireland for a few days on 9 October – don’t know if he has any slots left? (Or if you could make the journey without it worsening you? Or if you could afford the fees?) Urgh. URGH. I hate that we even have to ask these questions.

      You are welcome to reblog part, though not all of my post, as long as you credit and a link to the site, as you said. Thanks so much for the vote of confidence in my writing!

  3. Hilary 14th November, 2013 at 5:17 pm #

    Thank you for sharing your ME experience; I am well able to identify with what you say. My view is that the overuse of antibiotics has caused damage to the brain and central nervous system. This may or may not heal. The medical profession and drug companies choose not to acknowledge this, presumably for fear of compensation claims. I have had ME for 8 years now. Fortunately I have a caring husband who is willing to read, write and type for me (hence this comment on your experience); my light intolerance is so severe that I try to only open my eyes for eating and personal hygiene.

    • Tanya 20th November, 2013 at 12:07 pm #

      Oh boy. I feel for you – I would find it so hard to be light intolerant to that degree. That sounds so difficult. I am really glad you have a caring husband. I am so grateful for my own husband and the way that he loves me – the marriage vows ‘in sickness and in health’ are big vows to make. Thank you so much for using your precious energy and reading time to visit my site.

  4. Debbie M 12th November, 2013 at 11:14 pm #

    It is very sad that there are so many doctors GPs or consultants believe that certain illnesses are just a figment of ones mind. I was once under a neuro, that told me I had MS symptoms but not the illness..gee thks I said but where does that leave me. He said nowhere, I don’t know what is wrong, after some tears he prescribed amitripyline for the pain & tiredness and then eventually pregablin for the muscle twitches & pins and needle sensations. Eventually I was passed to a more junior neuro (best thing ever). She had a completely different outlook and after ruling out various other stuff, referring me to a rheumatologist for joint pains and muscoskeletal issues, she then asked me what was bugging me the most. I told her that I was so tired of being tired, getting up each day was getting more of a struggle and that sometimes the tiredness outweighed anything else. If my hubby tried to wake me up to eat, I would take his head off (bless him). She then referred me to the endocrinology dept and not long after got my diagnosis (although they label it ME/CFS). Still after more than 10 years it was a relief to get a diagnosis at all, and then they wonder why sufferers get depressed. I came to the conclusion a very long time ago that the doctors are not as clever as they think they are and even my initial neuro admitted that the brain and immune system are such complex machines that they only know a very small fraction of how it works and therefore can’t know where to fix many many things that can go wrong. I wish everyone all the best and hope that one day most of us can lead a more active life without weighing up how much it will cost us in the days/weeks or months to follow and whether or not the activity is worth the payback…god it would be lovely to not even have to consider that.

    • Tanya Marlow 13th November, 2013 at 9:10 am #

      Thank you so much for sharing something of your story. It seems crazy that a doctor would just say ‘you have an illness that looks like MS, but isn’t MS, so I’m not going to do anything.’ I still don’t really understand why it is that so many doctors just shrug their shoulders if it doesn’t happen to fall within their small pot of expertise, and assume that if they don’t know about it, it doesn’t exist. I’m so glad you finally got your diagnosis – 10 years is such a long time. Thinking of you.

Trackbacks/Pingbacks

  1. ME and the NHS « Monyhull Blog - 8th November, 2013

    […] interesting and helpful post here for those of us who have friends struggling with […]

Leave a Reply

Please send me my free ebook and updates