Tuesday, January 31, 2012

ME and CFS - is one more real than the other?

Part 2 of Trusadh, the Gaelic programme about ME/CFS was on BBC Alba last night, and can be watched on BBC iPlayer here - http://www.bbc.co.uk/programmes/b01b1z0l - for the next week or so, maybe longer. If I find a YouTube upload for it, I'll leave a link in the comments for those outwith the UK.

Sometime soon I'll write more about how Mickel Therapy has managed to improve the quality of my life where other things have failed.

However, during the past week or so, following the first programme, I've become more aware of the debates within the ME/CFS communities, and some of the hostile attitudes towards Mickel Therapy. What I wasn't quite prepared for was the strongly held opinion by some that ME is a real illness but CFS somehow is not.

When I was approached to be in the programme - Trusadh, on BBC Alba - about ME/CFS (see ME, me and Gaelic TV), I was told Mickel Therapy is controversial – that it is not accepted as a valid treatment by either the NHS or the ME Association, but there is a lot of anecdotal evidence with plenty of people claiming significant levels of improvement or even complete cure.

When I looked up Mickel Therapy online, there were many prepared to say Dr Mickel was just a money-making charlatan and that at best, those who recovered were probably responding to some kind of placebo effect.

And I have to say, when I read Dr Mickel’s book, I wasn’t overly reassured – some of the concepts are poorly explained and it can sound at times like it’s bordering on some kind of mystical practice.

Having been through the therapy sessions, I can happily say there is nothing mystical about it. It doesn’t require leaps of faith, dodgy beliefs, pills, potions, magical symbols or crystals being placed under the pillow.

What it does require is a shift in your narrative – your understanding of how you interact with your thoughts and emotions, and changing how you respond to life’s little (and not so little) irritations and upsets.

It comes under the category of “talking therapy”, which distinguishes it from physical or drug-based therapies. For many, however, the idea a set of words could possibly have an impact on a physical ailment sounds like something out of Harry Potter, not the medical world. It seems nonsensical.

But then in our culture, we are often given to believe there is a huge separation between body and mind. One is physical, the other mental and each has its own set of illnesses, which have to be treated physically or psychologically according to which they are.

And yet, how separate are they? Can one not affect the other? Supposing you suffer from shingles, which is made worse when you get stressed – is that a physical or a mental condition? If you can learn techniques to calm your mind so the shingles attacks lessen or disappear, does that mean it wasn’t real, or that it was all in the mind?

The boundaries between body and mind are far less distinct than we generally believe.

But this idea of separation is unquestioned by many, and I think this is what leads to the belief that Mickel Therapy and others like it either it can’t be a “real” treatment, or it can’t possibly work on “real” illnesses – leading to what I have read many people say - if it works, you couldn’t have been properly ill in the first place.

The ignorance, and arrogance, of that position is to my mind the most controversial aspect of it all. It seems there are plenty of people around who wish to place their life-debilitating illness in a hierarchical superior position to other life-debilitating illnesses (my illness is more “real” than yours – or mine is physical, whereas yours is “just” mental).

Within the ME/CFS world, there are many who get upset that ME (Myalgic Encephalomyelitis ) appears to have been “downgraded” to be encompassed under the CFS (Chronic Fatigue Syndrome) banner. This or that study is quoted to show that ME is a separate condition.

Maybe it is, maybe it isn’t. I’m not a doctor or researcher. I use the label CFS or ME (or whatever combination) because that’s the label the doctor gave me. All it ever meant to me was, “We accept you suffer debilitating tiredness, but we don’t know why, or what can be done about it. CBT (Cognitive Behavioural Therapy), GET (Graded Exercise Therapy) and even anti-depressants help some people to varying degrees. We can arrange them for you, but if they don’t work then we don’t have any other answers, so you’ll just have to go away and live with it.

Maybe I have ME; maybe I have CFS; maybe I have something entirely different. All I do know is the symptoms have been horrible to live with and the idea that they might never ever go away has felt appalling. To have lived nearly 6 years with depleted energy levels, brain fog and virtually no emotional reserves, and with the prospect of no end, has not been fun to say the least.

Now the Mickel Therapy has had a significant effect on me. I might not be 100%, but I am much improved and I now have a system, a path, which is highly likely to improve me further in time and stop me relapsing.

This means, instead of having to write off the rest of my life, I now have hope again.

But I find it astounding, irritating and not a little sad, that there are people who want to say that if Mickel Therapy has worked on me, then somehow I wasn’t really ill, or my illness was “less-than” theirs.

I can fully understand anyone not wanting to be misdiagnosed (I have this condition and you are saying I have that condition and are treating me for that, but it won’t work on this), but doesn’t mean their illness is more “real” than the one they think theirs is being mistaken for, and it is incredibly insulting to say that it is. Yet I frequently seem to come up against this attitude.

I can understand it comes out of frustration, but do they not see the irony in the fact they have fought so hard to say their condition should not be treated as less-than, when they are prepared to dismiss someone else’s condition as such?

It matters not if you have ME, CFS, Depression, OCD, MS, or any other illness – if it is debilitating and impacting on your life, then you deserve help and support. If an illness is devastating your life, then hierarchies about what counts as more important, or more “real” are a nonsense.

Saturday, January 28, 2012

ME, me, and Gaelic TV

On Monday past I was on the telly. On Monday coming I will be again in the second of a 2-part programme about CFS/ME and the controversial treatment, Mickel Therapy.

It began last summer when I was contacted by a researcher for TV production company, Mac TV, who had discovered my blog and some of my writings about CFS/ME and wondered if I spoke Gaelic. I said I didn’t, but would be interested in being kept informed about the programme they were planning.

I can only guess they were struggling to find enough people who a) had CFS/ME, b) spoke Gaelic, and c) were prepared to have a TV camera stuck under their nose while they were followed through a treatment not sanctioned by the ME Association, because they got back in contact to ask if I’d be up for being involved in the programme.

Towards the end of August I was visited and interviewed by the director, Robbie, and filmed talking about the effect CFS/ME had had on me over the past 5 years.

The filming process is distinctly odd on a number of levels, not least the fact they need to shoot quite a bit of other footage than just the interview bit. They also need to film all the cutaway shots – one of which involved me going for a walk up the street with a camera stuck to a metal frame attached to my shoulder, so it stayed in a fixed position in relation to my face, which it was pointing at. So as I moved about, my head appears to remain in place and the background constantly shifts.

The next thing to film was my first meeting with Dr Mickel, the guy behind the controversial treatment. He’s usually based up in Elgin, in the north of Scotland, so this meeting was arranged in a hotel just outside Glasgow.

Subsequent sessions with Dr Mickel were done via Skype, and in mid-November, Robbie returned with Douglas the cameraman to interview me about what impact the sessions had had on my condition.

Originally it was only going to be one programme, but as there were several other people with CFS/ME being interviewed, as well as the head of the ME Association, Dr Mickel and a few others, they felt a one hour programme wouldn’t do it justice, so put together two. Although personally I think they could have easily made a 10-part series.

Part 1 was about what the effects of CFS/ME are, and what it’s like to live with it – from dealing with doctors to the impact it has on those around you.

Part 2 will be following a couple of us through Dr Mickel’s treatment and the controversy surrounding it.

For a limited time (possibly only until Monday), episode 1 is available on BBC iplayer here.

It is mostly in Gaelic with English subtitles, apart from the input of Dr Shepherd of the ME Association, an ME sufferer from Edinburgh, the wife of another ME sufferer and, of course, me.

I had thought they might put up Gaelic subtitles when I was talking, but apparently everyone in Scotland who speaks Gaelic, also speaks English, so they don’t bother.

Unfortunately, access to the programme is limited outwith the UK, and I’m not allowed to upload it to YouTube for copyright reasons.

I would urge anyone to watch it if they can - not because I'm in it, but because it does give a very real sense of what it's like to live with the condition. I found the interviews with a retired policeman who's had it for 20 years, absolutely heart-wrenching.

Part 2 of the programme, Trusadh, is being shown at 9pm on Monday 30th January on BBC Alba, after which I’ll write a bit more about how I got on with Mickel Therapy and the impact it’s had on my CFS/ME

Wednesday, January 25, 2012

Burns Suppers

The 25th of January is Burns Night – when Scotland, and many around the world of Scottish descent, celebrate the birth of the nation’s poet, Robert Burns.

The traditional meal for the occasion is haggis, neeps (turnips) and tatties (potatoes).

In our household this evening there were 4 different variations being served between the 6 of us.

My stepson, Rory, who’s currently staying with us for a wee while, had the real thing – a proper haggis made of sheep’s heart, lungs and liver wrapped up in a stomach lining – which he bought from a local butcher.

Maggie and my stepdaughter, Holly, are both vegetarian so went for a Macsween’s Vegetarian Haggis.

Unfortunately neither real nor veggie haggis tend to be gluten free, so both were out for Meg. Maggie made up a nut-roast mix for her, using gluten free breadcrumbs in the ingredients.

I joined Meg for this as I find haggis to be quite vile, and the veggie option I’ve not been able to face since we bought about 20 of them in the reduced-to-clear section of the supermarket one year and effectively OD’d on them in the weeks following.

Rogan had a pizza.

I wonder how reflective this is of mealtimes across Scotland these days, and what The Bard might have made of it all…

Rory's haggis, neeps and tatties, with a bit of onion gravy

Friday, January 20, 2012

The Challenge of the Self Portrait

Last year I was asked by The Stewartry Camera Club to give a talk to their members about Portrait Photography. It seemed to go down well and I was asked back this year to talk about self-portraits and to set a competition, which I did on Wednesday.

In some ways, self-portraits can be seen as one of the most challenging forms of photography for most photographers, because there are significant obstacles to overcome on 2 levels.

The first is to do with the technical difficulties in getting the exposure, composition and focus right when you can’t actually look through the lens – at least if you want to avoid the cliché of just standing in front of the mirror with your camera in front of your face.

Cliché number 1

So you have to try and get everything set up then either set the timer, run round, get into place and adopt the right posture and expression before the camera goes click, or you need something like a cable or remote release that allows you to trigger the shutter from a distance – at least if you want to avoid the other cliché of holding the camera at arms length and just pointing it at you.

Cliché number 2

However, in many ways the far bigger challenge is in deciding how you wish to portray yourself to the world.

It’s one thing for other people to take your photo – it is their interpretation of you in that moment. But if you are taking it yourself, you have to make the final decision about how you want to appear. Intelligent? Sexy? Cool?

However, the problem with trying to look cool, for example, takes us back to those dilemmas from our teens. Cool people seem to be effortlessly cool. People trying to be cool are inherently un-cool. So how do you make yourself look cool without looking like you’re trying to make yourself look cool? The risk of ridicule if you get it wrong is gut-knotting.

Trying too hard

The reality is that while most people are wary about having their photo taken in case they look awful, most photographers feel this even more intensely. Indeed, for many, one of the primary advantages of holding the camera is precisely so you don’t have to be in the image. So to tell an audience of camera club members that I wanted them to turn the device on themselves was never going to be an easy sell.

However, I did my best to try and fill them with enthusiasm for the idea, primarily pushing the notion of photography as storytelling. It can be like having your own dressing up box – you can pretend to be whomever you want.

And once you move away from the suggestion that it has to be some kind of accurate representation, and into the idea of performance and play, then the possibilities for creativity and fun open up massively.

I don’t know how many will enter the competition. I know it will push almost all of them completely out of their comfort zone, but I feel the experience of doing it will be all the more rewarding because of that.

In about 3 weeks I’ll be given the submissions to look through and judge, and in the 2nd half of February, I’ll be going back to announce the winners.

Although anyone who is brave enough to overcome their reluctance and actually enter is already a winner in my eyes.

And if you have 5 minutes to spare, below is a video about the making of the Lavazza (coffee) 2012 Calendar, where they asked 12 famous photographers to create self-portraits. Each had a very different take on the concept.

The LAVAZZERS 2012 from Eugenio Recuenco on Vimeo.

Monday, January 09, 2012

2011 in Photographs

It seems that once something has been done 2 years in a row, it becomes a tradition. So I thought I'd better keep up with the tradition established with 2009 in photographs and continued with 2010 in photographs, with a collection of images reflecting the past 12 months with my camera.

As always, feel free to click on the images for larger versions

January - Uncky Rogan

When I was a teenager, I was extremely awkward with small children - I had no idea what to do with them. My son, Rogan, on the other hand, is a natural. Kids love him, and he's brilliant with them. When the grandchildren came to stay at the beginning of the year, I took a series of photos of Rogan with Cormac, the youngest of them. I just love the warmth and connection that oozes out of this image

February - Sean Taylor at The Mill Sessions

One of the more successful projects of 2011 was becoming involved with The Mill Sessions. The Mill on the Fleet decided to use one of its galleries as an intimate venue for musicians (it only has space for about 50 people in the audience) , and I came on board to photograph the main acts before their performance. The idea is to build up a Hall of Fame for the Mill, but it has also been a chance for me to photograph some great musicians, some of whom could well be big names in the future. Sean Taylor certainly fits that description - his blues singing and guitar work blew everyone away when he played back at the beginning of the year.

March - Scottish Tattoo Convention

When a friend of mine told me he was mates with the organisers of the Scottish Tattoo Convention being held in Edinburgh, and could get me and Rogan in with press passes if I wanted, it was too good an opportunity to miss. Out in the ordinary world, most people will be a bit cold to the idea of a complete stranger asking to take their photo. But at a place like this, people with tattoos, piercings and amazing hairstyles are used to being looked at and don't think twice about posing for the camera. For a photographer who loves faces, it was a dream come true.

April - Meg with a Dandelion

When I'm looking through the lens of the camera, you can tell when I think I can see something special, because my finger starts clicking more rapidly. With the sunlight behind Meg blowing dandelion seeds, I switched the camera to continuous burst where I can shoot up to 8 frames per second. Before I knew it, I had over 160 photos. This one was my favourite

May - Spring Fling Open Studio Weekend

For 3 days at the end of May, along with around 90 other artists and makers in the area, I opened my studio to the public. To make it a bit more interesting, I decided to photograph anyone who was interested. Usually I like to spend a couple of hours with a client in a portrait session, but for this event I spent only a couple of minutes. Even so, there were times when the queue went out on to the street and I ended up taking over 130 portraits. This one of Colin and Marianne always brings a smile to my face. (You can look through and buy a book of the photos I took that weekend here - Facing The Weekend)

June - Midsummer Music Festival

It's one thing to photograph people in the studio, where I can talk to them, get them to look into the camera and change the lighting and background. But when they are performing on stage I can do none of these things. The skill set of shooting musicians playing live is very different, but also a lot of fun. This one of the singer, Blue, from the band Quirkus, was one I was particularly pleased with.

July - The Wickerman

Trevor Leat and Alex Rigg build giant willow sculptures to be set alight on special occasions, and each year for the past decade they have created 30 to 40 foot high figures to go up in flames at the end of The Wickerman Festival in SW Scotland. If you follow this link you'll find a full set of the images I took of the Building and Burning of The Wickerman.

August - Isle of Skye

The Isle of Skye off the West Coast of Scotland is an astonisingly beautiful place. Yes it rains a lot, and when the wind stops blowing you'll get eaten alive by the midges, but when the sun comes out, it takes your breath away. We had a lovely, well needed week there back in the summer.

September - Wigtown Book Festival

Being selected as the Artist in Residence for the Wigtown Book Festival in September was an amazing experience. Over the 10 days I took in excess of 170 portraits of writers, locals and visitors to the Festival. This time I decided I wanted to avoid smiles, and asked each person to look intensely into the camera. One of my favourite encounters was the actress and comedian, Elaine C. Smith who was intelligent, funny and completely down to earth. When I asked her to glare into the lens she gave me this wonderful stare that would stop anyone in their tracks. 5 seconds later she was laughing again. During the Spring Fling Open Studio event over the first weekend in June later this year, anyone will be able to visit me in Wigtown where I'll be back at the studio I had for the Festival, and all 170+ photos will be pinned to the wall, staring at you

October - Halloween

When creating lanterns for Halloween, I still get a kick out of how easy it is to carve pumpkins rather than the turnips we did as kids.

November - With a Cameraman Over His Shoulder

BBC Alba - the Gaelic speaking Scottish digital TV channel commissioned a programme about CFS/ME. Despite me not speaking a word of Gaelic, somehow I ended up being interviewed and filmed for it (along with several others I should add). So at the point I took this photo, the cameraman in the background was filming me. I don't know whether his shots of that moment will appear in the programme, but it did feel a bit odd having a camera pointed at me while I was pointing it at someone else. I think the programme will be broadcast in a few weeks time, so I'll mention more about it then.

December - Christmas Lights

Self portraits are never easy at the best of times, because you can't look through the lens at the same time the shutter clicks. It's even harder when you're wrapped up in Christmas lights that are plugged in. Still I've rarely shied away from a challenge and I was delighted to get this one published on the site 1x.com.

An annual summary in photos for three years running - definitely a tradition now...

Tuesday, January 03, 2012

Interview by Conny Wenk

One of my favourite photographers, Conny Wenk, has started a new blog series called “25 on Tuesday”.

The idea is to interview creative people she has met over the years (via blogging or real life), and to start off the series I feel rather honoured that she’s chosen me.

So if you’re interested in finding out something I consider to be over rated, or what the last book I read was, then pop over and take a look – 25 on Tuesday: Kim Ayres

However, if you’re not a regular visitor to Conny’s site already, then ignore my post and keep scrolling down to enjoy some of the most wonderful photography on the Internet.

Conny has an immense talent for relating to people and getting the best out of them via her camera. I defy you to spend 10 minutes scrolling through her photos and not end up with a warm smile across your face.

Visit http://connywenk.com/blog/ and add her to your favourites.

Sunday, January 01, 2012

Happy New Year!

Well, who’d have thought it? We’ve survived another year!

The end of the world was predicted last year by Harold Camping. Twice in fact – after the rapture failed to materialise in May, he said he meant October really. But ultimately he went on to join that great long list of people who’ve been getting it wrong for thousands of years.

According to some interpretations of the Mayan calendar, 21st December 2012 is when the world will end. Other intepretations say it will just be time to flip it over to the next page...

However, the biggest dilemma will be trying to work out whether it’s worth buying Christmas presents or not - obviously it will be pointless getting them if the prediction is true. But if we hold off until that point just to make sure we haven’t wasted our money and the apocalypse fails to materialise, again – well, we’ll have missed most of the deadlines for ordering online.

Hmmm... decisions, decisions...

Meanwhile, whether the world ends this year or not, I hope each and every one of you has a wonderful 2012.