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| The main UK protest, photo courtesy of Ruth Black. |
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? ;-).
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| 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 breakfast TV: http://www.youtube.com/watch?v=8YIj4CpBTVI
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
Tony Bent on five live Breakfast http://www.youtube.com/watch?v=F3XlxWv6ZcY&feature=youtu.be
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
The Herald, Nicola Seal: http://www.heraldscotland.com/news/home-news/scottish-sufferer-in-lyme-disease-whitehall-protest.21037966
Caroline Lucas, MP for Brighton Pavillion http://www.carolinelucas.com/blog/tackling-lyme-disease-and-tick-borne-diseases-in-sussex.html
Natasha Metcalf in This is Dorset: http://www.thisisdorset.co.uk/Gillingham-woman-Natasha-Metcalf-joins-London/story-18881185-detail/story.html#axzz2SDqmsTr6
Louise Dean in the local paper (she isn’t actually from
Orpington): http://www.bromleytimes.co.uk//news/orpington_woman_fundraising_for_specialist_treatment_after_catching_lyme_disease_1_2175690
Appeal for petition signatures on you tube:
http://www.youtube.com/watch?v=_1roQwZXI-s&list=PLGk8maTXO6B3BloqomNCqwEKN9QEAfxw9
Photographs from a journalist/ photographer at the protest: http://www.demotix.com/news/2039853/worldwide-lyme-disease-protests-takes-place-30-different-countries/all-media
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
