92 in 92

92 in 92

Wednesday, 30 October 2013

'92 in 92' given Invest in ME Matrix Slot 92!

The folks at Invest in ME have come up with a great way of tracking and incentivising people to help raise the money needed for the Rituximab trial.

You can keep track of all fundraising events that are aiming to help raise awareness and funds for the trial, here's how it works:


Also check out the individual events through the link below and please help promote and support them as much as you are with this one!


They're now up to £266K of the £350K needed, not far to go now -to donate please check out the justgiving pages on the right!


Team 92

Saturday, 26 October 2013

London Calling!

Wow, I think it's fair to say that we all know a bit more about tubes and trains after a marathon planning session to fit in the 12 or so London clubs!

Here is our route for travel across the capital -if anyone can spot any major errors then do let us know in the comments section!

We've also bumped troublesome outlier Gillingham to Day 3 as Day 2 was looking like a whopper and we're now staying at Heathrow so as to get to Brentford and Reading quickly the next morning.

Londonium Clubs

Crystal Palace (SE25 6PU, Norwood jct)
Wimbledon (KT1 3PB, Berrylands)
QPR (W12 7PJ, Wood Lane)
Chelsea (SW6 1HS, Fulham Broadway)
Fulham (SW6 6HH, Putney Bridge)
Brentford (TW8 0NT, Brentford)
Leyton Orient (E10 5NF, Leyton)
Millwall (SE16 3LN, South Bermondsey)
Dagenham & Redbridge (RM10 7XL, Dagenham East)
West Ham Utd (E13 9AZ, Upton Park)
Charlton Athletic (SE7 8BL, Charlton)
Arsenal (N5 1BU, Arsenal)
Tottenham (N17 OAP, White Hart Lane)

heathrow to qpr 
(piccadilly line to hammersmith, change to circle/hammersmith to wood lane)
43 mins

qpr to chelsea
(wood lane to hammersmith, district line to earls court, earls court to fulham broadway)
22 mins

chelsea to fulham
(fulham broadway, district line to putney bridge)
4 mins

fulham to wimbledon
(putney bridge to wimbledon, district line then overground to Berrylands)
26 mins

wimbledon to crystal palace
(berrylands overground to clapham jct, overground to Norwood jct)
40 mins

crystal palace to millwall
(norwood jct overground to canada water, canada water to south bermondsey, jubilee)
30 mins

millwall to charlton
(south bermondsey to london bridge, overground then london bridge to charlton, overground)
32 mins

charlton to west ham
(charlton to london bridge, overground then jubilee to west ham then district to upton park)
39 mins

west ham to dagenham 
(upton park to dagenham east, district)
16 mins

dagenham to leyton orient
(dagenham east to west ham, district then west ham to stretford, jubilee then stretford to leyton, central)
45 mins

leyton orient to tottenham
(leyton, walk to leyton midland road then overground to blackhorse road then victoria to seven sisters then overground to white hart lane)
45 mins

tottenham to arsenal 
(white hart lane to seven sisters, overground then victoria to finsbury park then piccadilly to arsenal)
20 mins

arsenal to heathrow
(arsenal to heathrow, piccadilly)
30 mins

Sunday, 20 October 2013

The Rituximab Trial

For full info on the trial and its effects so far click on link below:

http://www.ukrituximabtrial.org/ - £264K raised so far, £86K to go!

We believe that the UK needs a rituximab trial, both to benefit UK patients and to support the international effort. With your help, we can make this happen.  At the 2012 Invest in ME international ME conference IiME announced we were looking into starting a rituximab trial in the UK. We have spent the last year working on that idea as part of our efforts in setting up a  Uk examination and research facility for ME in Norwich. On 6 June 2013, we announced that we were initiating a UK rituximab trial and began fundraising for it.

Thursday, 17 October 2013

ADLIB Recruitment - First Event Sponsor!

The lovely peeps at ADLIB (www.adlib-recruitment.co.uk) have agreed to be a sponsor for our event and tweet/plug/promote to the hilt.

In return we'll be slapping their logo on our t-shirts, flags, car, website and anything else we can fit it on.

Further discussions as to what they're willing to help us with are happening but for now it's a great start!

Cheers guys!

If you would like to contribute in some way or know a company that does then please make contact in the comments section below.

Wednesday, 16 October 2013

Celebrities / Famous Folk who've reportedly had M.E.

Just found this list online, needless to say we'll be writing off to a fair few of them to see if they'd like to support us

Celebrities and M.E.

From time to time, celebrities are reported as having M.E., CFS or M.E.-like illnesses.
Some may not have had a clear diagnosis - often, we simply don't know.
Here is a list of recent press reports (oldest first).
Date in the press
Suzanne ShawSinger/TV personalityNov 2008She said she had two months off and was "diagnosed with CFS, a form of M.E."
Ian WoosnamGolferNov 2008Is reported to have M.E.
Rebecca AdlingtonBritish swimmerNov 2008It's claimed that she recovered from CFS which she developed after contracting glandular fever.
Anna HemmingsBritish canoeistNov 2008Reportedly diagnosed with CFS in 2003. It's said she recovered using reverse therapy.
Yvette CooperChief secretary to the treasuryOct 2008Was ill for a year when she was 25 and talks openly about the illness.
Jonathan AnsellEx-singer for G4Dec 2008He has revealed that he has suffered with M.E. since contracting glandular fever as a student.
Suzi WalkerFormer modelDec 2008Is reported to have spent £20k on "quack cures" for her M.E. but then realised all she needed to do was slow down.
David BarclayJoint owner of the Ritz hotel, Littlewoods and Daily TelegraphDec 2008David is alleged to have M.E. and finds that spending time in the fresh air of the Swiss Alps helps alleviate his condition.
Chris MarquesChoreographerDec 2008Has talked about his M.E. and says that he's been cured by the lightning process.
Jeremy PivenActorOct 2009Says "I would just fall asleep on set… I battled through but when I started on the play I completely shut down. I had CFS. Four months into the Broadway play, I ended up in hospital."
Olly FreemanTriathleteJan 2010The Guardian said he was struck down with CFS in 2009, seemingly after a stomach bug.
Andrew OldcornGolferMar 2010Reported to have had M.E. for two years.
Mandy SmithEx-Model and former wife of Rolling Stone Bill WymanApr 2010Has been plagued by illness since her early 20s, and she thinks it has been M.E.
Michael FlatleyIrish dance starJun 2010Has reportedly talked about his return to health and dancing after being struck down with CFS.
Davie ProvanFormer Scottish footballerSep 2010
Robbie WilliamsSingerNov 2010Robbie revealed he was affected by debilitating M.E.-like illness, although he said it was not as serious as M.E.
Claire GunneyKayak championNov 2010
Claire was diagnosed with CFS in 2007. In 2010 she returned to full international competition and was ranked second in the international Canoe Federation's marathon rankings. Unfortunately her CFS symptoms returned and Claire retired from competitive sport in 2012.
Darcey BussellRoyal ballet starNov 2010Developed Post Viral Fatigue Syndrome.
Lauren CuthberstonEnglish ballet dancerNov 2010
Joe SayersCricketerNov 2010Is rumoured to have been diagnosed with Post Viral Fatigue Syndrome.
Michael CrawfordStage and screen actorJan 2011Reportedly collapsed and was diagnosed with M.E. in 2005. He has since returned to work.
Laura HillenbrandAuthorJan 2011It is claimed that Laura has had M.E. for 20 years, and wrote her second book Unbroken while housebound with the illness.
Mike SkinnerSinger with "The Streets"Feb 2011Is said to have been ill with M.E. in 2009, delaying the release of his fifth album.
Stuart MurdochLead singer in the band Belle and SebastianFeb 2011It's reported that he was housebound with M.E. for eight years, time he used in songwriting.
Tim BidwellOscar nominated for short film, "Poet"Feb 2011
Kirsty StrainComedienneApr 2011Had M.E. for nine years from the age of 12. She now considers herself "in control" of her symptoms

Going Underground

Day 2 presents a major logistical problem for our intrepid stadia connoisseurs.

There are 13 grounds that can't really be accessed via automobile due to major traffic worries and congestion charges etc.

These awkward buggers include:

Crystal Palace                                                     (SE25 6PU, Norwood jct)
Wimbledon                                                          (KT1 3PB, Berrylands)
QPR                                                                    (W12 7PJ, Wood Lane)
Chelsea                                                              (SW6 1HS, Fulham Broadway)
Fulham                                                                (SW6 6HH, Putney Bridge)
Brentford                                                             (TW8 0NT, Brentford)
Leyton Orient                                                       (E10 5NF, Leyton)
Millwall                                                                  (SE16 3LN, South Bermondsey)
Dagenham & Redbridge                                      (RM10 7XL, Dagenham East)
West Ham Utd                                                      (E13 9AZ, Upton Park)
Charlton Athletic                                                   (SE7 8BL, Charlton)
Arsenal                                                                 (N5 1BU, Arsenal)
Tottenham                                                            (N17 OAP, White Hart Lane)

There is some major google mapping and london underground map perusing going on to join these up (by people who know nothing about London).

Also it's worth mentioning that we will be coming from Gillingham and heading towards Reading so most likely will be dropping off the car at somewhere around Reigate and heading into London from there (whilst being on the M25 to get to Reading early the next day!).

If anyone can successfully work out the optimum way to piece these together then I am open to bribes....

The car - introducing Kelly The Kia

What chariot will take us to glory on this hair-brained venture?

Diesel fuelled Transporter or spacious estate with hard-wearing tyres?


It's this.....

It's very clean you might think!  Well this was taken on the day I bought it in 2010.  It has been washed and cleaned at least twice since then.

Vital Statistics

Litre: 1.4
Petrol: Unleaded
Year: 2010
Mileage: 21000 (2700 to be added on this trip!)
Handling: Not bad
Tyres: Budget
Stereo: CD, USB doesn't work
Other important features: No central locking or elec windows, no air-con, smells a bit

Tuesday, 15 October 2013


In between all of this excitement we are going to need to get some sleep.

As much as we're all going to grow to love the aforementioned Kia, we're going to need some cheap hostel/hotel accommodation who'll let us arrive pretty late with car parking outside.

So far we are looking into overnight pit-stops at the following:

  • Plymouth
  • Bournemouth
  • West London 
  • Milton Keynes
  • Hull
  • Carlisle

It would be great if anyone could recommend affordable (we're talking less than £30 ppn) digs for the trip.

How Rituximab has worked in Norway and The USA

This is a fantastic vid on how the trial has benefitted ME sufferers and how people are travelling to the US to get treatment they should have access to at home.

Monday, 14 October 2013

Which ground won 'Pie Of The Year' in 2013?

This year's winner was Brighton and Hove Albion.  

Am told no seagulls were harmed in the making of the pie.  Shame.

What do we do when we get to the ground??

This one is tricky for the following reasons:

  • We will be extremely pushed for time.  One of the days racks up almost 25 grounds so time is of the essence.
  • We may well be climbing kerbs and on double-yellows to avoid extortionate parking costs
  • We have very little idea what time we will get to which ground -we do have a rough plan but we'll be fighting matchday and bank holiday traffic.
  • Apparently they don't like you to taking photos at certain stadiums (Stamford Bridge), c'mon fellas it's for charity!

Ideas so far....

  • Quick appalling Gareth Bale style kick-about? Most of us are more gifted than old Monkey Boy in this area but we don't have time to enjoy ourselves.
  • Most definitely posing in front of the stadium sign with flags, t-shirts on and big cheesy grins/tired eyes
  • A pie at each ground? hmm maybe not.
  • A pint at each ground? see above.
  • Meet and greet with a club legend? Maybe, that would be good but not sure of the timings
  • Talk to the locals?  Are you kidding, did I not mention we're going to Millwall?!
  • Learn and perform a chant from each club, we'll get back to you on that one!
  • A friend from work suggested booting a ball into every stadium!  Is that littering?
  • Your suggestions are welcome.......

The Team

'92 in 92' Team

Mike Harley (Lead Driver and CD selector)

  • Failed 4 driving tests and crashed 2 cars. 
  • Now has laser improved eyesight, no longer fears driving in unfamiliar areas
  • Tendency to sing and drum at the wheel
  • Extremely aggressive driving style and potty mouth road rage
  • Knows NOTHING about cars or basic car maintenance
  • As a Man UTD fan is not looking forward to visiting The Etihad, Anfield or Elland Road

Cat Harley (Chief Navigator and Photographer)

  • Has Sat Nav on her phone and unlimited data usage
  • In charge of feeding Mike when he's driving
  • Supports Yeovil Town, who don't technically have any rivals!
  • Falls asleep a lot when in the car (although not at the wheel)
  • Struggles to reach the pedals and release the handbrake
  • Is well proud of her new camera and not afraid to use it (a lot)

Dr Mike Ward (2nd Driver and Team Sociologist)

  • Only drives old bangers
  • Knows NOTHING about cars or basic car maintenance
  • Only listens to Bruce Springsteen whilst in a car
  • Proud Welshman, supports Cardiff City and a one time West Ham Utd follower
  • Had a fair few accidents and scrapes down the years
  • Elected team timekeeper and social media updater for the event

Raz Rizvi (Team Film Producer)

  • Angry ranter and exposer of racist behaviour (Red Raz)
  • Blinkered Arsenal fan and Spurs/Van Persie hater
  • Likes making cups of tea in shop doorways on road trips
  • Does NOT like the Little Green Cars (band)
  • Will be expected to play guitar in the back of the car
  • Has no concept of time

Now you've met the unlikely heroes, do they really have what it takes to pull it off??

Day 1 taking shape!

So after a marathon session on Google Maps we now have the following route in place for Day 1.

It's going to need to start in Plymouth for complicated 'where would we start on Day 2' reasons.  And also we're going to need to stay there the night before to enable a start time of 7.00 am on Wednesday 16th of April.

Day One: Wednesday 16th April

Plymouth Argyle (PL2 3DQ) to Torquay United (TQ1 3PS)         34m      53 mins
Torquay United (TQ1 3PS) to Exeter City (EX4 6PX)                23m      38 mins
Exeter City (EX4 6PX) to Yeovil Town (BA22 8YF)                   47m      1hr 4mins
Yeovil Town (BA22 8YF) to Bristol City (BS3 2EJ)                   42m      1hr 16 mins
Bristol City (BS3 2EJ) to Bristol Rovers (BS7 0BF)                   6m        17 mins
Bristol Rovers (BS7 0BF) to Newport County (NP19 0UU)          28m      36 mins
Newport County (NP19 OUU) to Cardiff City (CF11 8AZ)           16m      29 mins
Cardiff City (CF11 8AZ) to Swansea City (SA1 2FA)                  43m      45 mins
Swansea City (SA1 2FA) to Cheltenham Town (GL52 5NA)          109m     1hr 51 mins
Cheltenham Town (GL52 5NA) to Oxford United (OX4 4XP)        46m      1hr 8 mins
Oxford United (OX4 4XP) to Swindon Town (SN1 2ED)               34m      55 mins
Swindon Town (SN1 2ED) to AFC Bournemouth (BH7 7AF)           92m      1hr 34 mins

£75 petrol                                                                                     520m       11hrs 24

  • Ashton Gate (Bristol City) is 0.5 miles from my house (that's not very interesting).
  • Of these stadia, I have only visited Bristol City, Bristol Rovers (c'mon the Gas) and Yeovil Town (Cat's team) before.
  • None of these teams are in action on this day (thus making traffic easier).
  • I am slightly scared about Swindon to Bournemouth having already driven for 10 hrs by this point!! It's a horrible road and Bournemouth is a NIGHTMARE to get to!!
  • Swansea is a long way from anywhere too!

The Idea - Visit the 92 English Football League Grounds in 92 hours for Invest In ME

Cat and I were walking around feeling a bit hungover in Clevedon a couple of weeks ago and got onto the subject of doing a sponsored event for M.E.

My good friend from school Ian Couch has struggled to overcome M.E. for nearly 7 years and when he told me recently of a new drug trial which had been really successful in Norway, I could sense for the first time in a long while that he felt there was a light at the end of the tunnel.

Ian, or Couchie as I have always called him, hasn't been able to work since 2006.  In such a long time I've always found it amazing how positive he's remained throughout such a difficult period.

Couchie, Me and Dowse (2003)

Anyway he told me about the Rituximab trial and how for it to be rolled out in the UK needed upwards of £350,000 to be raised.  I don't know the science behind it at all but I know that the results of this trial have been pretty amazing and in some cases improvements have been seen upwards of 65%!  That's enough to get some people back to work or certainly leading more 'normal' lives doing the things that some people take for granted.

You can find out more about the trial here and the amazing work that the people at Invest in ME do:  http://investinme.org/IIME%20Statement%20UKRT%202013-09-24.htm

We're a bunch of massive football fans and have always wanted to go to all of the grounds (bizarre I know).  Personally it ticks a lot of boxes for me too - I love driving long distances, listening to new music for hour upon hour and treating motorways like a giant dangerous game of Tetris.

We needed a time limit to do it in and 92 hours seemed an obvious and catchy one to pick.  Can't actually be done in 92 concurrent hours -that would be impressive but with 2 drivers could be quite dangerous.  But with a giant stop-watch and a committed 12/13hrs driving a day we are plotting to probably hit somewhere around 70 hrs -mainly due to the fact I need to be back to work on the Tuesday and already have lots of time booked off for 2014!

It also gives me a great opportunity to sample some of the UK's finest service station sustenance and see how good Kelly (my Kia Rio) really is!  Plus we'll be visiting such glamorous locations as Scunthorpe, Bury, Millwall and Hartlepool (sorry!).

The goal is obviously to raise as much money and awareness for this cause as possible. Plain and simple. It would be a waste of the opportunity to not maximise on the event fully so we'll be writing off for donations from local businesses and try and get on tv and radio where possible (TalkSport and local BBC shows have been discussed so far).

Anyway much to be done to get this off the ground, sponsorship starting to come in so there's no turning back!!!!