Wednesday, 31 July 2013

The Pain of Diagnosis

So yesterday I went to the rheumatology department at St. Peter's Hospital in Chertsey, Surrey. The receptionist and the nurse were both friendly and helpful and everyone I had met at the hospital was eager to help. I was even ready to let the fact that they had lost my referral letter for around 3 weeks slide in the face of such helpfulness.

On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.

It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).

He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.

My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.

I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.

My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.

In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.

I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.

Badly done, NHS, badly done!

The Infamous PACE Trial - Ignorance is No Excuse

So I can't be alone in my experiences of the NHS. Thankfully, other than the whole CFS/ME thing, I have always been very healthy and I've only been to A&E once and as a hospital outpatient once, both for fairly trivial things. And they have always been helpful.

It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.

They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.

Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.

Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.

Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!

And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.

CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.

I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.

It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.

Sunday, 21 July 2013

Resting. And I mean properly resting.

"What is this life if, full of care,
We have no time to stand and stare.
No time to stand beneath the boughs
And stare as long as sheep or cows.
No time to see, when woods we pass,
Where squirrels hide their nuts in grass.
No time to see, in broad daylight,
Streams full of stars, like skies at night.
No time to turn at Beauty's glance,
And watch her feet, how they can dance.
No time to wait till her mouth can
Enrich that smile her eyes began.
A poor life this if, full of care,
We have no time to stand and stare."

The poem is called 'Leisure' and was written by William Henry Davies. It's a very famous poem but I'm sure I'm not alone when I say that I struggle to find time for this kind of leisure. Leisure is counted as going on facebook, going out with friends, maybe even something more energetic like a favourite sport. I even skim read over the poem because I was so impatient to get on with doing the next thing.

We rarely fully stop.

I knew since getting ill that the logical thing to do was to rest, but in my mind this involved signing up to Netflix and watching hours of TV because I was convinced that my mind wouldn't cope with more than 5 minutes of inactivity.

I was encouraged by a lady I met who had partly recovered from CFS/ME and I had read that a number of other people had advocated it too, that I should properly rest for at least 30 minutes a day.

I thought this was crazy - doing absolutely nothing, for 30 minutes?? No TV, no music, no book, nothing. It sounded like a waste of time. We are told constantly that we don't have enough time. Inventions are created that make everything take less time and so we can fit more into our lives and have learned to expect things instantly.

I know that this is said a lot, but since relapsing, I have found it more true than ever, because I was forced to slow down and remove the complications.

Where I felt I couldn't keep up with my friends, I now sort of see it as they can't slow down enough to keep up with me.

I tried resting for 10 minutes yesterday, feeling sceptical. It felt lovely, and I barely noticed the time go by because for once I felt so relaxed. I tried 15 minutes today and I'll keep increasing. Let's see if it actually produces some physical result!

Thursday, 11 July 2013

Just a clue...

God works in mysterious ways. So they say.

Every now and again, something happens, or some strike of inspiration gives you just a little clue as to these mysterious ways.

I found out on Monday that I had passed every exam I had taken in my first year of my university degree (although one exam was only 2 marks over the pass mark!), and not only that, but I had achieved a 2:1 overall!

Well I did a little dance and was very shocked as I was expecting a 3rd or a 2:2 at best and thinking about just how far I had come.

Technically, you could say that I have backtracked, but I feel it is the overall picture that shows the best image.

I spent last summer feeling slightly ill (not realising that this was in fact mild CFS/ME) but nonetheless able to go out and enjoy my summer. God used that summer to show me just how strong He is, and what I can achieve with Him. I thought that this was just me being readied for university as an experience that I expected to be tough at first but very exciting.

What I didn't realise was just how tough independent living is, especially when your world crashes down with a serious illness that had evolved from mild to moderate/severe and no form of support. Other than your faith.

Without a readiness beforehand I may have completely crumbled. I was too ill to read my Bible or go to church or listen to praise songs, let alone sing them myself. Even praying was proving tricky as brain fog was proving putting a sentence together extremely difficult so that my prayers generally came down to one word: 'help'.

I don't think that doubting or confusion or anger is necessarily a bad thing in a person's Christian life. But it can only be a good thing if you address these feelings and work through them. Working through doubts to end up saying either 'I understand' or 'I don't understand, but I trust you' I think is very healthy and strengthens a relationship with God. Because it isn't God who abandons us during times of great need, it's us abandoning God because we look for a scape-goat.

My perseverance paid off and now, thanks to over a month at home being cared for by my family I can read my Bible, pray and sing most days although church is still beyond me. But I am proud of my achievements and doing these things are all the more precious because of the rediscovery of how great they are.

And so I realised that becoming ill is not the result of an action by God, it's not a cause and effect relationship, it's more of a parallel relationship. Considering that God is God and created the world and all that, it's pretty impressive that the relationship is still an 'alongside' relationship rather than a 'looking down on you' relationship. So that when I was struggling it wasn't because God was annoyed, it wasn't because of anything in particular if I was looking for something to blame. It just happened, but God had seen it coming and prepared me as best as He could.

And it is that, that is the clue. And I even think that there is plenty more to learn from this, as I have challenged God to make this all worth my while by showing His glory through it. So let's see what happens!

Friday, 5 July 2013


The exam season is thankfully well over but my body is still reeling from the effort of a first year at university.

My aim, once term ended, was to spend the entire 4 month summer holiday doing my utmost to increase my health as much as possible. Doctors appointments are few and far between, and appear to be following a philosophy that my illness is all in my head, despite the rheumatologist I went to see saying she thought it was a biological illness. And so, my health is in my hands! What a challenge!

I've never been a very disciplined person and I like what is bad for me way too much so this has been a very difficult turnaround. I have been aiming to reduce my symptoms through a process called pacing. It's got quite a vague name and description and probably means different things to different people. Based on trial and error, and common sense, I have described it in my life to mean doing as much as I can without producing symptoms.

Sounds simple? No. Not only is there the frustration of 'as much as I can' meaning sitting up in a chair for a couple of hours and maybe ironing a couple of things, but there is the daily fluctuations that characterise this condition. Some days I am capable of doing more and others, less. And it is so tempting to do much more on a day that you feel you can do much more but this only leads to the next few days not being able to even sit upright. This is called a 'boom and bust cycle' and it requires a lot of self restraint to not succumb to it.

I guess the main idea is that without pacing and control, the good days and bad days become much more distinct (like the idea that the rich get richer and the poor get poorer) and the overall trend is a downward inclination. But by reducing the difference between good days and bad days (or as I prefer to call them up days and down days) meaning that life is a little more predictable and the down days are not so bad. I think this also encourages the overall trend to go up too but it's too soon to tell.

So hopefully 4 months will be enough for the pacing to make enough of a difference that going back to university in the Autumn will be possible.

The next step is to get a proper, official diagnosis from someone who is willing to pass it on to student finance and those in charge of handing out benefits but that's another battle!