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.

****

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

  1. Rebecka 23rd October, 2013 at 9:34 pm #

    Oh dear, it sounds like it’s just as bad, if not worse, in Britain as it is in Sweden… I have no words, I’m bone-weary-tired too. Praying for you, for me and ME patients everywhere.

    (Some good news: Last week a group of politicians, ME specialists and patients met in the Swedish parliament to discuss the illness. I hope something good will come out of it!)

    • Tanya 26th October, 2013 at 8:51 pm #

      Solidarity, sister.
      xxx

  2. Violetdragon 23rd October, 2013 at 9:30 pm #

    Tanya
    I am really sorry to hear your story. I can completely understand where you are. I contracted ME when I was 18 and I had just started university things were bad but with help from some very understanding staff at the university things were manageable. However, a couple of years later I was studying for my PhD and things began to deteriorate and I could do nothing. It honestly makes me shudder to remember those times. I spent a year in and out of hospital, on complete bed rest, there were days when I could hardly even get out of bed to get to the bathroom. It affected my whole body and I was hospitalised several times with worrying cardiopulmonary problems. In a way I was lucky as my GP was amazing and gave me a ME diagnosis straight off. I think it helped that he knew I was highly active and really into sport so their whole ‘exercise phobia’ bull poo didn’t stick.
    I would say to you that although things feel awful and life is so hard that you don’t have the energy to cry hang in there. Very little is known about ME (and I speak as a fully qualified medical researcher). After 12 months of hell for some reason my symptoms started getting better I could begin to walk a round the house and even go outside a little in my wheelchair, gradually everything picked up. There seemed to be no rhyme nor reason to it. Now, I cycle 14 miles a day, run 15km a week and go on huge long hikes every weekend nobody would ever no I was ill. You may still get better! I am the proof it can happen.
    From a medical research point of view I think there are a few problems.
    1) I honestly believe there are several separate conditions, ME is one, this is horribly debilitating and can literally destroy lives. CFS is different. I do think this is a problem but I honestly believe that is triggered from a different source than from ME. The problem is there is no diagnostic test for either and so they cannot be easily classified.
    2) I think a lot of stigma comes from the ME community, I am in touch with some brilliant researchers who are fascinated by ME and want to try and differentiate between ME and CFS but the work is not going to be carried out. I was really heartbroken to discover this until I found out the reason people stop researching on ME is because they receive so much hate mail from ME and CFS campaigners in case they don’t give the ‘right’ answers which the campaigners want to hear.
    So I would say to any ME people who read this blog to try to support the doctors and researchers on this condition. Doctors that I work with are limited by government regulations by what they can and cannot prescribe and even in some cases diagnose. Also remember that a lot of the treatments will not have undergone NHS approval for very good reasons, pharmaceutical companies are expert at propaganda!
    Tanya, I wish I could tell you that some miracle drug will be discovered and it will help you get better, but I honestly don’t think that ME works like this. All I can say is take every day as it comes, try to always get some sunlight (this seemed to help me) and think that maybe this time next year you could be running a marathon to raise money for the hummingbird foundation.
    I will keep you in my prayers
    X

    • Liz Eph 24th October, 2013 at 10:30 am #

      dear violet dragon,

      i was very interested to read your comments. especially 2). i think that if your researcher friends investigate the rumours more closely they will find that there is very little evidence of hate mail. the main person who has made the accusations has not been able to produce much in the way of evidence. he has however counted official complaints as hate reactions ! his accusations been widely reported, particularly in the sunday times, and have further contributed to the stigma associated with “chronic fatigue syndrome” and people i know have had abuse and rejection from relatives and friends, and 2 i know of have had abuse shouted at them by neighbours because of his insinuations.

      on all the face book groups where i belong there has even been an embargo on even mentioning his name or any of his collaborators anywhere on fb or on twitter. the first major article in the times about it was july 2012, the day before the new international consensus criteria were published and instead of publishing this break through work his accusations were published instead.

      i would discourage them from attempting to do research on m e in britain at the moment unless they manage to get private funding as, from what i’ve observed, they are unlikely to be able to do truly independent work.

    • Tanya 26th October, 2013 at 8:50 pm #

      Thanks so much for sharing of your experience. I agree that there are probably two different conditions, and that CFS needs to be separated from ME. (I guess there may be even more than two different conditions…) Accurate diagnosis is key.

      I also agree that it is a great shame that more researchers aren’t going into the field of ME. I’m not convinced as to the reasoning, though. It is predominantly the psychiatrists who are getting the brunt of the hate mail (one doesn’t know if there are actual threats, but any kind of hate mail is pretty scary to get), but I know that Dr Shepherd sadly gets a share of hate mail from those viewing him as a traitor to the cause for not standing up enough against the CFS stuff. There are some in the ME community who have become (understandably) a little paranoid.

      However, there are a good number of proposals each year going to the Medical Research Council which focus on biomedical causes or cures into ME – and they are all being rejected in favour of research into psychiatric causes or cures. Some who have put in several excellent proposals (and who have excelled in other fields) have been rejected so many times they have now given up working in the field. I know that for others there is a stigma attached to researching in ME because so many view it as a made-up illness that their research is not viewed as favourably in the academic community. So I reckon the paucity of research is not easily traced to one factor, and the tiny minority of people making death threats has been magnified surprisingly loudly. This becomes frustrating, as Freedom of Information requests from ME patients (which are perfectly legitimate and useful for academic transparency) are then falsely labelled as malicious harrassment (when it is neither of these things), and the voices of ME patients are further stifled.

      But this is a big issue!

      It’s always encouraging to hear of others getting spontaneously better, though it is hard to still hope for it after so long. Thanks so much for your prayers.

  3. kingfisher 23rd October, 2013 at 8:47 pm #

    Tanya, my heart aches for you. I don’t have ME, but I do have multiple chronic health problems that really limit my activities and strength. I can certainly understand the pain-frustration-fear-discouragement of constant fatigue and pain. I know it must take courage just to make yourself get out of bed in the morning. That the doctors don’t believe in you or refuse to try to treat you (or aren’t allowed to) must impact your emotional health severely. I’m so sorry that you and so many people have to live in such pain.

    I pray that God will infuse you with his strength, mercy, forbearance — and hope. I pray that medical science will find some answers to help ease these illnesses. God bless you, dear sister in the Lord.

    • Tanya Marlow 13th November, 2013 at 9:05 am #

      Somehow I had missed this comment until now. Thank you for much for these lovely words, and for your empathy. This was such a blessing to read this morning.

  4. Beth 23rd October, 2013 at 7:23 pm #

    Hi,

    I just wanted to say to you and others affects; keep hope. I had CFS/ME for 6 years, including a 7 week stint in hospital. I am now well. I have been backpacking, I work full time, I go to bed late and get up early, just because. It is possible to totally recover without any after affects. I really hope this happens for you soon.

    Take care.

    • Tanya 26th October, 2013 at 8:37 pm #

      Thanks so much for stopping by – I’m really grateful you did! I’m so glad that you are now well from CFS/ME (particularly after a 7 week stint in hospital – yikes!) That’s great.

  5. Karmen White 23rd October, 2013 at 6:50 pm #

    Frustrating, heart breaking, and anger inducing! FEELING HELPLESS grrrrrr.

    • Tanya 26th October, 2013 at 8:35 pm #

      Thanks for feeling it with me, girl!!

  6. Giles M 23rd October, 2013 at 6:48 pm #

    The situation does seem to be at least as bad as several decades ago. And I am sure that the authorities, with the backing of psychologists and industry, along with the negligence of far too many medics and researchers, are keen to keep it like that, if not make it worse. But there is a real sense of desperation crying out from the ME community, at the same time as the first little signs of a real and potentially massive turning of the tide of understanding of the disease. Here’s hoping!

    • Tanya 26th October, 2013 at 8:35 pm #

      Thank you so much for stopping by, Giles – I really appreciate it! You do so much good in the world of ME that I am really grateful for you. Some days it feels like we are powerless and nothing is going to change. And other days, like today, I feel that maybe something is finally shifting. I’m daring to hope…!

  7. Laura 23rd October, 2013 at 5:16 pm #

    Hi Tanya. I’ve just come across a link to this post from a friend on facebook. I will definitely be following your blog from now on! This post is spot on – I have totally given up on the NHS for getting help with ME. The only person I have ever seen who really seemed to understand was a research nurse for a trial I participated in. She was just there to take regular measurements and do tests, I don’t think she had any specific ME training. But she was great. Consultants and GPs are useless. I’ve given up bothering. I totally agree that it shouldn’t be like this. You would never have thought that this blog post was written in 2013!

    I’d like to add a little note in defense of Graded Exercise Therapy. I did this and benefited hugely, but only because I had a fantastic exercise physiologist who was experienced in helping people who were chronically ill. You must not push it. You must not exercise when you don’t feel you can. I think GET would actually help people if the doctors prescribing it understood how it works. It is not ‘exercise’ as well people think of it. My goal was to get to the point where I had enough upper arm strength to drain a pan of pasta so I could feed myself a hot meal! I didn’t need a gym…

    Have you tried taking Amitriptyline? It’s an anti-depressant that in a low dose helps with some of the muscle pain. Not a miracle cure, but definitely made a noticeable difference.

    Thank you so much for writing this blog. I look forward to reading more.

    • Tanya 26th October, 2013 at 8:33 pm #

      Hi Laura – thanks so much for taking the time to comment – I really appreciate it. I’m really glad that Graded Exercise Therapy was helpful in your case, and it does sound like yours is an unusual experience of not being pushed. My friend had a very bullying experience with a physio, and the PACE trial (which most Graded Exercise is based on) does emphasise exercising even when you don’t feel you can, so I wonder if perhaps your physiologist was a bit of a positive exception!

      It’s amazing what a difference those positive few make, like that research nurse you found, though I’m sorry to hear that your consultants and GPs are so useless.

      I’m glad you found my blog – I look forward to getting to know you more!

  8. Kimberly 23rd October, 2013 at 3:49 pm #

    This is not ok, not ok at all:( Praying for you, Tanya. For answers, wisdom, and open doors.

    • Tanya 26th October, 2013 at 8:27 pm #

      Thank you. It’s bizarre how emotionally healing it is, just reading someone else saying ‘it’s not okay.’. Thanks so much for stopping by.

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