Tuesday, 21 May 2013

Protest success!

What a fantabulous few weeks it's been! We had the  Worldwide Lyme Protests on the 10th and 11th May - 30 countries, all saying the same thing- Lyme disease is not being recognised, diagnosed or treated properly, and we need change to happen NOW! This was a grass-roots effort, entirely led by patients themselves, not organisations, just facebook, a few websites (UKUSA and Australia) and word of mouth. It was hard work, but boy was it worth it.

The main UK protest, photo courtesy of Ruth Black.
The protest itself was very well attended - massive respect to all those who battled illness and public transport to get there and my thoughts are with those who were too ill to attend, I hope we represented you well. I should also thank my family who really helped out - dad, my sister and brother in law who gave up their day to be there and set up/pack up, my partner for driving me up and down the country at a moments notice and putting up with the months of preparation, my other sister and mum for looking after our daughter. You are all ace. Also thanks to David of viz biz design who did us some fab banners, stickers and printing for free. Our website person also did a fine job, thanks.

Not sure of numbers, maybe around 70 at any one time, people came and went, so it may have been more like 100 overall attendees. The atmosphere was upbeat and convivial, Lyme is such an isolating illness, it's nice to just talk to people in the same position - and actually meet folk I'd only ever had digital contact with. I heard some absolutely appalling stories, another whole family with Lyme, a lovely young woman in a wheelchair who is incredibly sick and having seizures, another wheelchair bound woman who has been massively impacted and ignored by the NHS, some people who came along because they has seen the Breakfast show slot and realised there were people in the same position as them. These were people who weren't being reached by social media and forums, so it was great for them to connect with us. Leaflets were handed out to the public and staff coming and going from the Dept of Health and one plucky lady even went to the nearest hospital to hand out leaflets to staff there. There was even a mini protest held in Beccles, Suffolk where the protesters met three random members of the public who had Lyme -ooh such a rare, rare disease, eh? ;-) Here's a link to some more photos of the UK protest.

In the UK we got an absolutely unprecedented amount of media coverage for Lyme. The media coverage in the UK before has been fairly low level - local radio, local papers featuring local sufferers and the odd national magazine or newspaper article, but all quite infrequent. The protest saw a huge rash of articles (see list below), interviews and even me on BBC Breakfast telly , which was brilliant- it had a big reach and I think has meant that the protest has had a real lasting effect - big awareness raising and people have been coming forward saying they saw the TV or heard the radio programmes and are now re-examining their (non-lyme but lyme-like) diagnoses in a new light. A HUGE thanks has to go out to the super helpful journalist and Lyme sufferer Angela Howard who used all her contacts and worked very hard to get the BBC and others on board. You are a star. It also really helped that the BBC reporter/researcher who spoke to me had had Lyme and also that the 'expert' who sat next to me on the sofa on the Breakfast show has a brother with Lyme, so was sympathetic - what a co-incidence eh, incredibly rare disease isn't it? ;-).

Me absolutely cacking my pants after no sleep all night, outside the BBC studios in Salford.

Journalist Sonia Poulton came along and gave us her support, she chatted to lots of us so I hope she got a better idea of the issues involved. We submitted our Petition  (thanks to Denise Longman for co-ordinating this) how has over 10,000 signatures thanks to the publicity and the help of a very popular young lady on you tube . I hope the 30 odd patient stories and all our 40 or so photo messages will add impact. Whatever the authorities say, it is clear from those messages that something is seriously wrong with the way tick-borne disease is dealt with.

Whether it actually achieves anything in terms of changing attitudes in the Dept of Health or Public Health England remains to be seen. I have hope that with continued work, it might, and I certainly think some open minded doctors may have had their interest piqued. We will be asking for a response to our petition from the Dept of Health, but I haven't done this yet since it requires brain power and other peoples suggestions as to what to say. I got a reply from my letter to the Health Secretary, but since the reply to this also requires brain power and my grey matter appears to be comprised of pureed cabbage at the present time, I will post it in a later blog entry.

As a follow-up to the protest, UK Lyme sufferers have asked 38 degrees to run a campaign on our behalf. 38 Degrees is a British not-for-profit political-activism organisation that campaigns on a diverse range of issues, it has a good record for effecting change and putting pressure on the politicians. Please vote for this campaign, it's easy to sign in and vote. You get given three votes, it would help us if you used all three to vote for this campaign. Thanks so much! 38 degrees campaign suggestion

So what's been happening with me and my Lyme? The protest work has taken it's toll. It was months of preparation then insane last minute dashes to the TV studios. I couldn't sleep a wink for fear that I'd say something stupid on national telly. I've had two colds in as many weeks and then our house was turned into a hermetically sealed vomitarium (stomach bug for all of us). I've had a return of the Elvis legs, had to use a wheelchair (but not much), been weak (at times too feeble to pick up toddler or lift a teapot), sleepy, a bit brain fogged and massively fatigued. I think this has happened to loads of us since the protest- just the effort of doing it has made us sick. 

Had a surprise gallbladder attack on the way home from the protest - there we were driving up the M1 when Bam! a masked gallbladder starts banging on the window in a threatening manner.. eh, no actually I can't blame it on a phantom intruder, but on Burger King. BURGER KING!! (I hear a collective sharp intake of breath and some shaking of heads). Yes, I ate a Burger King. yes, it was disgusting, yes it made me really quite ill for about 5 hrs. Writhing around in the car and at my folks with gallbladder pain, referred shoulder blade pain and intense nausea. Ever since then then my pesky little bile storage unit has been twitching after every meal. In my defense, it was the only place open at the motorway services and I don't normally eat that kind of thing. I've been strictly low-fat and gluten free since. The bonus of being so utterly saintly (ahem) in my eating habits is I am now 59 kilos (just over 9st, or  130lbs), so I've lost 4.5 kgs in the last 5 months- Yey! I can fit into that gorgeous black dress again... boo that I'll never have the occasion to wear it...

I also got my cardiac holter monitor fitted two days before the protest- cue robomum for two days, toddler was most amused at all the wires. I don't think it recorded anything exciting though, annoyingly. I have started having palpitations when I lie on my right side in bed though, which is annoying and makes me breathless. I had my routine bloods done (thank you nice GP for arranging this) and all is fine apart from low ferretin (iron stores) and low eosinophils (which are often low for me - immunosuppression?). Obviously the over the counter iron tablets I've been on are too weedy so my GP kindly prescribed me some proper ones. Hopefully in a few weeks I won't be feeling like such a malnourished kitten all the time and will be able to get up the stairs without my legs buckling.

So, thanks again to everyone who made the Worldwide Lyme protests such a success, it truly was a worldwide effort for a worldwide problem. It's not going to change things overnight, but baby steps, baby steps...

Links to the UK media coverage:
BBC website article (was top story): http://www.bbc.co.uk/news/health-22468181

BBC radio Scotland (Nicola Seal), start listening at 1hr 46 mins: http://www.bbc.co.uk/programmes/b01s4q32

Elliot on Radio Solent, start listening at 1hr 42: http://www.bbc.co.uk/programmes/p017rv0n

Denise Longman on Radio Suffolk, start listening at 1 min 53: http://www.bbc.co.uk/programmes/p017tkm2#programme-broadcasts

Adelle Huckins on the radio, BBC Newcastle: http://www.youtube.com/watch?v=PKgGk-bd4OU&feature=youtu.be and on Tyne tees radio with Stella Huyshe-Shires, 2hrs 6 mins into the prog: http://www.bbc.co.uk/programmes/p01862yf

Angela Howard on radio Wiltshire Fri 10th May

Joanne Drayson’s you tube videos of the protest (the first three, there are more): http://www.youtube.com/watch?v=QdpXsM74hMU&list=FLCSU_aV6wfTxEfVj7WztkQQ


  1. Sorry you had to pay such a hard physical price for all this work but you were brill on TV and you couldn't tell you'd been awake all night!

    BTW I get palpitations when I lie on my left side and you guessed it nothing found on investigation. At least i know it's prob due to the Lyme now and nothing else sinister.

  2. A big thank you to Nicola and everyone who helped to make this such a successful event.

    I spoke with one doctor walking by with his bike on his way to catch a train - he said knew all about Lyme disease! - I said do you, really, well perhaps you would like to look at Lyme Disease Action website as there is so much you probably don't know about Lyme disease and handed him a leaflet with their website on. He promised he'd have a good read - I rather think he might.