On M.E. and Silence (M.E. awareness week 2013)

Last week I went on an Internet fast. It was meant to be like a silent retreat so I could focus on writing, away from the many voices on social media. I was looking forward to working on my M.E. book, and being productive.

 

But last week I found myself slipping into worsening health.

 

A month ago, I started taking a new drug that seems to help a bit. I have been writing more, doing more, enjoying myself more – and then this last week I was reminded that drugs are not magic. I have been tired, losing focus, unable to get my brain together, and by the end of the week I woke up and my body was screaming in pain, every muscle in acidic agony. Today I took a few steps and felt my legs buckling underneath me.

 

I am typing this on my ipad very slowly, whilst lying in bed; i don’t know how long my brain energy will last today. i am hoping that I will not slip back into relapse.

 

****

 

It is ME awareness week and I want to write something on M.E. and silence. Last week I felt the silence of being able to retreat away from social media. Then, as I got worse, I felt the silence of being unable to speak.

 

For eighteen months after the birth of my boy, I found myself largely silent. I couldn’t speak to friends for more than thirty to sixty minutes (per day). I had to ration visitors. I couldn’t leave the house much or for long. I couldn’t write. Each day, I read Facebook over and over, and tried to write one thing a day, just to prove to myself and the world that I was still here. I had thoughts, but they were hard to lasso and tie down, they just swirled around in my head. Eventually, they became congested, a long traffic jam of ideas, noisily beeping their horns, unable to go anywhere. My mind had plenty of noise: my mouth was silent.

 

Over the past eighteen months of rest, my cognitive energy has gradually improved, though my mobility is still badly affected and I remain housebound. I have tried to make up for lost time. I have spoken.

 

There is much noise in the world about M.E. from the people in power. Last week, there was a piece by Michael Hanlon in the Sunday Times magazine portraying patients with M.E. as hysterical extreme activists (he used the term ‘terror campaign’) and the psychiatrists who are treating them as heroic victims. It is nothing new: this type of piece has been doing the rounds for the past twenty, thirty years. A psychiatrist receives death threats from a couple of people: therefore that proves all M.E. patients are hysterical and don’t want to accept that they have a psychiatric disease. This is the story that is told again and again in the papers; M.E. patients have a psychiatric illness but they don’t want to accept the stigma (or indeed, to recover, because they are psychologically invested in their illness). We hear the stories of the miracle cures, the sudden recoveries. There is much noise, and it skews our perspective.

 

We don’t hear the silence of the 25,000-50,000 people in the UK, with M.E. so severe they are too ill to leave their house or bed; too ill to write, to talk, to walk. We don’t hear that an estimated 10-25% of people with ME never improve, and only perhaps as few as 10-15% recover fully. We don’t hear of the ME patients who were moderately ill but made debilitatingly and permanently worse by the very treatments that are hailed as the ‘gold standard’ and prescribed by NICE guidelines as the only successful treatments.

 

In the UK, there is no treatment recommended for Chronic Fatigue Syndrome/M.E. other than Graded Exercise and Cognitive Behavioural Therapy. This is based on the assumption that CFS/M.E. is a somatisation disorder (psychosomatic), that symptoms are caused and perpetuated by a combination of muscle deconditoning, stress, false illness belief and exercise phobia, and that it has no physical origin. If you don’t get better from these methods, it not the methods but the patient who is viewed with suspicion. We don’t hear of the alternative treatments: indeed, I had been ill for seventeen years before I learnt of possible pharmacological treatments for M.E.

 

We don’t hear about the effects of a few psychiatrists’ opinions influencing the majority of doctors and social services workers: denying M.E. patients wheelchairs or other aids because that will ‘encourage’ them in their ‘illness beliefs’, the patients denied home visits because they ‘need to be encouraged to get out and about’. We don’t read about the autopsies of M.E. patients, showing they had inflamed spinal cords, and recording ME/CFS as cause of death – an indisputably physical origin to their illness. We don’t read about Rituximab trials in Norway, where, in a small, double-blind trial, patients with very severe M.E. showed significant recovery after being treated with a cancer drug. We don’t hear about the UK government refusing to fund a larger trial for Rituximab because the psychiatrists on the panel blocked the application.

 

We don’t hear these stories, and there is so much noise and untruth; they would be drowned out, even if they had the strength to whisper them.
****

 

Sometimes i am aware of how unusual my position is: to be ill enough to experience these things and know the importance of it, yet well enough to write. That is why, today, I am pushing the envelope, just a little, to write this. My brain is not as clear as it should be. I will not be able to edit, polish, find an accompanying picture, respond to comments, provide the links and references for the facts I have cited. (I will update it with references and links as soon as i am well enough.) I will hit publish and then spend the rest of the day resting, hoping.

 

Last week, I intended to be silent online but writing offline. But for the first time in a long while, I was silenced by my illness.

 

Last week, I remembered the horrible powerlessness of not being able to speak.

 

In my silence, I felt the terror of being ill with no-one able to treat you, the vulnerability of not being believed, the loneliness of being in one room for years and years. I heard the whisper of the thousands and thousands of patients with severe M.E. who are too ill to write and cannot speak their story.

 

In my silence, I felt theirs.
Over to you:

There are two ways you can help:

  • Stop the silence: At the moment, there is next to no biomedical research on M.E. Please write to your MP asking them to stop pouring all the funds into investigating psychosocial causes and treatments for M.E. and to fund biomedical research into the illness instead.
  • Raise money for biomedical research: one easy way of doing this is to sign up to Easy Fundraising, and nominate Invest In M.E. as your chosen charity. Then, whenever you shop online, if you do it via Easy Fundraising, you can raise money for biomedical research, at no extra cost to you.

 

For further reading:

 

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(Updated with links 16/05/13)

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43 Responses to On M.E. and Silence (M.E. awareness week 2013)

  1. Paul Duffy 13th May, 2013 at 11:28 am #

    In the spirit of providing more info, the study on Rituximab is accurately summarised here.

    http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.tv2.no%2Fnyheter%2Finnenriks%2Fhelse%2Ffakta-om-mestudien-som-gir-haap-til-millioner-av-mennesker-3519496.html

    http://www.tv2.no/nyheter/innenriks/english-version-norwegian-research-breakthrough-can-solve-cfsmystery-3615631.html

    Short version: A patient with ME developed Lymphoma (non-Hodgkin’s). Treatment with Rituximab which suppresses B-lymphocytes and is also used against auto-immune diseases (immune cells) also treated ME symptoms. A phase 2 double-blind, placebo-controlled trial returned strong results.

    • Tanya 22nd May, 2013 at 8:49 pm #

      Thanks so much! This saved me a google search and meant that people could see the link while I was still waiting to get better enough to trawl through my piece and do the links. Much appreciated!

  2. Sarah 13th May, 2013 at 10:38 am #

    One of the things I am most thankful for is that I have slowly begun to regain my voice after years of being completely silent and unheard. As I gain the ability to write again I feel more and more burdened (privalaged) to speak up for those who still don’t have a voice as you do so well. I hope you avoid relapsing and things stabilise for you soon – it would be such a shame to lose such a powerful voice.
    Sarah recently posted…A Reluctant Confession for ME Awareness WeekMy Profile

    • Tanya 22nd May, 2013 at 8:48 pm #

      I completely relate to feeling the need to speak up – I am so glad that you are telling your story too. I loved your post for ME awareness week. Keep speaking!

  3. Saz 13th May, 2013 at 10:06 am #

    I was really moved by this post Tanya. As a mum currently with a whisper for a voice and a heart that is breaking for my children as I try to cope through yet another relapse I am thankful that you wrote this brilliant piece on the reality of living with this often brutal illness. You are amazing. Thank you from the bottom of my heart.

    • Tanya 22nd May, 2013 at 11:52 am #

      Saz – your comment really moved me. I wrote this for you and others like you.

  4. Joy Lenton 13th May, 2013 at 10:02 am #

    Weak as you are, Tanya, your voice here rings out loud and clear. You speak so eloquently and powerfully on behalf of us all. This illness, that is so devastating in its effects, deserves to be given an airing by one like you who lives and breathes it yet who can also write (as energy allows) in a way that informs and enlightens those without knowledge, and supports the rest of us who are battling as you are on a daily basis. We welcome your words whenever they flow free and without pressure on you to ‘speak’ more than you are able. Rest well, my friend, and be strengthened by the outpouring of love and encouragement coming your way. Love and prayers for further healing and enabling by God’s grace. Bless you 🙂 xx
    Joy Lenton recently posted…Being FramedMy Profile

    • Tanya 22nd May, 2013 at 11:51 am #

      Thank you – for all of these words, Joy. Thank you.

  5. Joanna 13th May, 2013 at 8:35 am #

    This is incredibly powerful, Tanya. I know your main point is to raise awareness about ME but you have also made me feel very challenged about the responsibility of having a voice and being able to use it. Thank you. One practical thing I wanted to say is: really don’t worry if you can’t post very often. You have such a clear, strong voice that one naturally (in my experience anyway) makes time to listen to it. I know that if you say something I want to pay attention to it. Whereas I will often skip over other, more chattering voices if I am short of time or patience. Praying for you. Eshet chayil!
    Joanna recently posted…wild, free and not very safeMy Profile

    • Tanya 22nd May, 2013 at 11:51 am #

      I’m so glad this inspired you!

      Thanks for your tweet, and for being so supportive to me. I really appreciate it.

  6. Zarla 13th May, 2013 at 8:18 am #

    I have never read the cognitive/thinking treacle I experience written so well, so clearly.
    Thankyou.
    If I can remember this I will try to use it.
    My own attempt at awareness is to educate my nearest & dearest, friends &colleagues just a little bit more.
    Stay strong,
    Z

    • Tanya 22nd May, 2013 at 11:50 am #

      This comment meant so much to me.

      It is my desire with my M.E. book to do just that: describe it in a way that people recognise, to be able to put some kind of a label and shape to it, and so get people to understand what it’s like.

      Thank you for using your energy to encourage me.

  7. Beth 13th May, 2013 at 7:48 am #

    You are a warrioress, Tanya. Hoping you feel better very soon.

    • Tanya 22nd May, 2013 at 11:49 am #

      Thank you for those prophetic words, Beth!

      Much love. x

  8. Sarah Bessey 13th May, 2013 at 7:06 am #

    Thank you so much for continuing to speak, Tanya. I’m listening and learning from you always.
    Sarah Bessey recently posted…In which (love looks like) an unsteady Mother’s Day and an anniversary at Wal-martMy Profile

    • Tanya 22nd May, 2013 at 11:48 am #

      Thank you so much, lovely Sarah.

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