Archive for October, 2009

Being Believed Continues

I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her.  Nothing much has changed in the last year, in fact in the last 2 years.

Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help.  She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me.  But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.

I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients.  They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers.  The advice being don’t let the patient know this because it only fuels the fantasy they are ill.

That’s pretty awful stuff to wrestle with.  Because even if my GP makes the right noises how do I know they are really invested in my care?

Well I plucked up the courage to ask my Lovely GP this time around if she had heard of  LDN (which is for another post) and if she would ever be willing to prescribe “off licence”.  She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).

I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in.  She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.

Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.

So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it.  Anything I think might help she is for me trying.

We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.

I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.

OK, so while I’m here … my early blood test results have been bugging me.  Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed?  She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.

I’m getting answers!  I’m not getting diagnosed with something treatable but I’m getting answers.

So as I’m about to leave Growler asks if I’m want to mention XMRV.  What’s that then she asks.  She hasn’t seen the news. So I give her a quick summary about the research findings.  And she gets excited. A retrovirus?  How interesting, let me write this down. 

This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus).  Except she says this at the same time as me.

Wouldn’t it be wonderful, she says, if it were found to be the cause?

Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.

I saw her willingness to help, but her being bound by the rules.  I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings.  I saw her keen to go read more and find if there was a way to help her patient, to help me.

I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.

Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me.  Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her.  She’s not going to give me a black mark as a difficult patient.

Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.

I once read that the best gift you can ever give to someone is to believe in them.

I thought it just meant to believe in their potential, but I’m learning it reaches much further than that.  And it is indeed a wonderful gift to receive.


On Being Believed

So this XMRV retrovirus, the possibility of having a tangible test that shows a significant physiological finding, got me thinking about what it means to be believed.

My family, my friends. my husband, my GP – they all believe I am very ill with ME/CFS and that is a physical condition.  But with nothing to point at it to say this is what it is, everything feels a bit woolly and mysterious.

I find myself from time to time with the doubts, fears and questions of what this all means.  What is it that’s exactly wrong with me and more importantly how can I get better? 

Recently I’ve read a few people with ME who say they too get those moments where they start to wonder if they are imagining it all. Can they really be this ill, for this long?

When I was 24 I became very ill with depression.  I had the beginning of what I would consider a sort of breakdown.  I was crippled by fear, confusion and a sense of hopelessness.  I was in a very low, very bad place.  I was lucky enough (and brave enough) to attend 9 counselling sessions through my employer at the time and struck gold with a counsellor who made a significant impact on my life. 

One of the simplest things she offered was that she believed me.

My GP at the time had been dismissive, saying I couldn’t be depressed and conduct myself in the sensible manner I did at his appointments.  He reluctanly prescribed ant-depressants once he knew I was getting counselling.  He was, in short, an ass and compounded many of the root causes of the depression.

But my counsellor had no doubts about the state of my mental health. Let me get to the point.

I remember saying to my counsellor, through a haze of confusion and pain, that sometimes I wondered if was really depressed or if I was just making it all up.  Pretending somehow.  Because sometimes it didn’t feel like it was really me.

She told me that of course I was going to feel that way sometimes.  Because it’s far easier to think we don’t really feel that way than to have to accept that we do.  It’s easier to live with the lie that we’re ok than to face up to the problem.

It makes sense to me.  And it translates to chronic health problems too.

By the way,  the depression is long since gone.  It took more years to pass and more support from a GP, a counsellor and a psychologist to set me free.  But with their belief in my illness, their support in it’s treatment and my own faith in myself I did beat the depression.  Back to being believed …

At around 27 years old, a year on from my recovery from depression, I had started to get fit again.  I walked a lot and I was going to the gym a couple of times a week. 

I started getting a funny pain in my left leg.  I stretched more.  I exercised more.  The pain got worse and it was there every minute of every day. 

Eventually I saw my GP about my funny leg pain that wouldn’t go away.  He told me he thought it might be a problem with my back, which seemed a bit weird to me, but he would refer to a specialist for some tests.

The pain got worse.  It started to wear me down. And the pain kept getting worse.

Before I saw the hospital I needed to move house.  I’d moved quite a few times in the proceeding years and always got stuck in.  My dad and brother came to help.  The room I lodged in was up two flights of stairs.  By the second or third trip up and downstairs carrying boxes I was feeling exhausted.

I remember my dad was pretty appalled by my apparent lack of fitness.  I needed to sort myself out. 

I didn’t know what was wrong with me but I knew something was wrong.  I’d had a driving lesson where I was in so much pain and so locked up I couldn’t change gear.  I would press the peddle and shout the gear to the instructor who would shift the lever for me.

Was I making this up?  How could a funny pain in my leg stop me from changing gear in a car or carrying boxes up and down stairs? Could it all be psychological somehow?  What the hell was wrong with me?

At the hospital they knew straight away that the funny leg pain was sciatica.  They even knew where the damage was in my spine just from where the pain was located in my leg. 

When she showed me my x-ray there was no longer any doubt.

The lower discs in my spine were (are) crushed.  The bottom disc was (is) seriously squashed.  Kind of like the width of a coin compared to the healthy discs higher up which were more like a finger width.  This was damage acquired over years and years.  It was permanent and it was irreversible.  I was 28 years old. 

The specialists assistant said “there aren’t many people your age in as much pain as you are right now”.

Suddenly the months of struggling were all real, all honest, all explained. 

I knew that in fact I had been performing well beyond what could have been expected of me.  When I think back now to the pain I was in then I would not have been going to work, let alone doing half the things I had been.  In fact I’m not sure how I managed, living alone, having to do everything for myself with that amount of pain.

When I told my parents about the diagnosis, about the lifestyle changes the phsyiotherapist had told me I must make (permanently) to save my spine, it felt like it changed everything. 

I hadn’t been making this up.  The pain had been much worse than I had let on.  The constant never ending pain had indeed been taking it’s toll.  Now I had an x-ray that showed all of this was real.

It took a long time to adapt.  But once family, friends, colleagues and even me had something concrete to know this thing was real and why it was happening, I knew that they could believe in the pain.  They could believe in why I had to say no to doing certain things and why I had to make certain changes in my lifestyle.  And I could believe in it too.  There was no doubt, no hiding, no denial.

So XMRV, ME/CFS and belief?

XMRV could be the key.  Not just the key to perhaps what causes ME/CFS, or is a contributory factor in ME/CFS.  But the key to belief in ME/CFS as physical illness.  A simple blood test to show a significant abnormality.  A simple blood test to let myself and others have no doubt.

Because being believed doesn’t just unlock treatment.  It unlocks understanding, compassion, awareness, support and certainity.

I don’t know yet if XMRV will turn out to be the key.  I can’t say the prospect of being diagnosed with a retrovirus that I cannot ever be free from and that I am in danger of infecting others with, is something I welcome with open arms.  But the proof, the piece of paper, the confidence in the diagnosis, is something I would like very much indeed.

XMRV … I Dare To Hope

 I dare to hope … XMRV … Researchers *might* have found the key to ME/CFS

“The study, published in the journal Science, shows that the virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just eight of 218 healthy “controls” drawn at random from the same parts of the US, the scientists said.”

The research seems to be holding up. Hillary Johnson (Oslers Web) says this is what we have waited all these years to hear.

“The world has flipped. It took one human generation, but it turned right side up today… A nova has appeared in the constellation.”

The Whittemore Peterson Institute published it’s research in Science magazine yesterday and are continuing with their findings. 

“This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.”

A blood test is being developed. They are mapping treatments to this retroviral infections (many drug therapies already exist that could treat it).


XMRV (and XAND) could be the key.  It could be a secondary disorder, a passenger, another engima in ME/CFS.  But it could be the key, the cause.

It’s early days.  More research is needed. But the ripple of excitement from this particular finding is striking.

MEA Response to Green Paper ‘Shaping the Future of Care’

I’ve just emailed The ME Association to offer my support for their response to the Green Paper ‘Shaping the Future of Care’. 

If you haven’t already signed the petition to lend your voice in opposition to this paper please take a moment to do so now

Image by Benefits & WorkAt the moment direct payments are made to successful applicants of carers on low incomes and sick/disabled persons with personal care and mobility needs.  This Green Paper seeks to change the system and give the funding to local authorities to adminster care and mobility needs. 

Except local authorities don’t have a good track record of adminstering other schemes and the services they would provide would not necessarily replace how people are able to use their payments currently.

You can read the MEA’s concerns in their response here and they are concerns I share.  So I wrote to them to lend my support and also to give some examples of how I rely on my DLA to help with a lot of things that Social Services couldn’t give me assistance with – so I effectively would lose my assistance from the government.

I would also give a huge thanks to Benefits and Work and their continuing efforts to rally support in opposing this Green Paper.  Without them many people would be unaware of the implications of these proposals and many groups would not be so actively engaging in the debate.


Dear Friends at The ME Association

I am writing to lend my support to your response to the Green Paper on ‘Shaping the Future of Care”,

I am a member of the ME Association.  I have ME and have been ill for 4 years. 

I am in receipt of DLA lower rate mobility and middle rate care awarded in October 2007 to October 2009.  I am in the process of re-applying for DLA as my award is coming to an end.  I am fortunate to have a supportive GP who added weight to my last application.

As someone with ME in receipt of DLA I support your response to the Green Paper and echo what you have said.

My husband works to support us both.  I do not earn a wage, I do not claim Incapacity Benefit or Jobseekers benefits.  I do a little part time self employment as an artist, working when I am able to, but my income from this is very small and would equate to working just a couple of hours each month in a conventional job. 

My DLA is my main source of income and means to support my personal care, mobility and medical needs.

I rely on my DLA to pay for many things for my care, mobility and medical needs which would not fall under the remit of service provision from Social Services. 

Here are some of the things things I rely on my DLA to pay for:

  • prescription medication (a yearly certificate)
  • over the counter medication
  • suppliments (eg. fibre suppliments, vitamins and energy suppliments) which help with symptoms
  • help with gardening as I am unable to do any myself
  • upkeep/maintenance of my wheelchair which I rely on when I have to go anywhere when I need to stand or walk for longer than a few minutes
  • help with fuel bills as I am virtually housebound, being sedentary and having trouble with temperature regulation due to ME
  • thermal clothing to help keep me warm as my mobility problems mean I am sat still for long periods and also for when I do go out in my wheelchair (assisted) during autumn and winter
  • help with broadband which allows me to stay in touch with family and friends which would otherwise be impossible due to my mobility problems and problems with communication over the phone and face to face
  • earplugs for noise sensivity
  • eye glasses which I require because ME affects my ability to focus when I am very ill
  • help with delivery for shopping as I am unable to go out to the shops and so rely on using online shopping and paying for postal delivery

I am delighted The ME Association wil be responding officially to the Green Paper and fully support your stance.



Push It 11 Sep 2011

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