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May 9th, 2011

redtoffee @ 11:29 pm: ME/CFS awareness video - this week is international ME/CFS awareness week

Excellent video about ME.This week is ME awareness week. Please watch and spread the awareness. This video is by my friend Daisy and is amazing. It also has pics of me and many of my friends included. It is also getting loads of hits!


 

Laura
~X~



February 28th, 2011

burningembers6 @ 04:07 pm: boston doctors
Are there any Boston doctors that specialize in the care of CFS?My neuro told me to go back to a rhuem for CFS care.But the rhuem's office told me to call the dept of infectious disease.

December 20th, 2010

redtoffee @ 01:33 am: Low Carbon Dioxide levels and how i overcame them. It could help you.
 This and Low Dose Naltrexone is the two things which have helped me the most. I spent 18 months in bed until May this year and am a lot better now. I have both ME and Crohn's disease.

I had bad sessions where I would get myoclonic jerks where your whole body or parts of it have big jerks, sometimes I would end up 6 inches off of the bed or throw myself on the floor etc...At the same time it happened I would become paralysed, noise and light sensitive, blurred vision, slurred speech, pins and needles etc...at my worse during some of the 18 months when I was mostly bedbound, I would have these episodes all day. During a collapse my body would basically shut down and my hands feet would get colder and go blue, my fingers would go numb, nobody could draw blood from me when like this either as my veins shut down.

I kept a journal through most of this which you can read here. Also about the treatment I was receiving at Breakspear Medical Centre in Hertfordshire. http://www.caringbridge.org/visit/lauradunks (I am about to update it again with all my latest news.)

I went to a private hospital and was found to have low levels of carbon dioxide due to tests by a neurologist and I know people with ME who had similar issues who have improved since raising their CO2 levels. And I have improved so much too for the same reason. I only get them rarely now, when I'm too hot/cold/hungry/stressed/or over exert myself I haven't had one in 3.5 weeks. I have had my CO2 levels retested and they are pretty much normal now.

If you think you have this then I can talk you through something called Buteyko breathing which raises your CO2 levels. It is not the quickest method of improving but it obviously costs a lot of money to go to this hospital. The breathing is free and it helped me a lot.

Let me know if this sounds like what happens to you. Do you also find you are air hungry. Like you cant get enough oxygen? This is also part of the problem. Although it is false because your body thinks it is oxygen you are low on, so you breathe faster and are lowering your CO2 levels. You end up with something called Chronic Hyperventilation syndrome.

The trick with the Buteyko breathing is to breathe in quickly and out as slowly as you can. At first it feels like you are starving your body of oxygen. You want to hyperventilate but you shouldn't. Eventually as your levels of Carbon Dioxide rise it gets easier. Your body doesn't panic so much as you are doing it. And you find you can hold onto the breath for longer and longer before breathing out. You can find out about it on the internet and seeing how long you can hold your breath for is a good measure of your improvement. You should practice this daily increasing the time you do it for as often as possible. Eventually it becomes second nature and you can do it without even thinking.

You can google to find out more about these things. It is a real situation which basically can happen to people with infections (M.E.) and valid medical problems. I had ME a long time before I developed the CO2 deficiency as a result.

This is the best explanation I have found about both the C02 deficiency and Buteyko breathing:
http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/diagnostics-and-pharmacy/pathology/immunology/chronic-fatigue-syndrome/patient-information-leaflets/?assetdetesctl515399=20146&categoryesctl515399=289



I hope you all have a wonderful Christmas anyway,

Laura
~X~

December 18th, 2010

redtoffee @ 10:55 pm: WAMCARE auction results for ME/CFS research and announcement
  WAMCARE announcement - I will reveal how much money was raised for ME/CFS research. Also why WAMCARE has closed as a charity. Please spread the word.

http://wamcare.blogspot.com/2010/12/auction-results-and-news-regarding.html

Thank you for your support

Laura Dunks

July 10th, 2010

redtoffee @ 02:09 pm: Please vote for ME research on a facebook application
The following information has been copied from various sources. If the charity P.A.N.D.O.R.A receives enough votes they will get a grant which they want to use for neuroendocrineimmune research (into ME and similar illnesses.) Voting is free and takes a few seconds. PANDORA is the only ME charity that is in with any chance of wining money. So please vote!

P.A.N.D.O.R.A.'s number one focus is the establishment of the NeuroEndocrineImmune (NEI) Center, a grass-roots patient-driven and physician-approved community project, to be located in the state of New Jersey, and with satellites offices. Our mission embraces neuroendocrineimmune disorders (NEIDs) such as chronic fatigue syndrome-ME, fibromyalgia, chronic Lyme disease, multiple chemical sensitivity (environmental illnesses), and Gulf War Syndrome/Illnesses. Our goals are: to continue to provide educational programs for patients, caregivers, physicians, and the public; advocate and spearhead grass-roots initiatives to raise awareness for NEIDs and for the substandard quality of life individuals with NEIDs face daily ; achieve successful and supportive partnerships with local, state & federal government health agencies, and other similar organizations; support and advocate for increased scientific research; encourage and assist patients & their families in leading successful live

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July 5th, 2010

redtoffee @ 08:25 pm: 1 day left on current items on EBAY until July 6th
1 day left items on EBAY charity auction until July 6th including:


Alan Fletcher (RARE signed photo)
4 Schalke 04 signed fan cards (Manuel Neuer, Felix Magath, Benedikt Howedes, Lewis Holtby)
Aaron Pritchett signed photo
4 Neighbours fan cards (Susan, Karl, Bridget, Toadie.)
more...Collapse )

June 27th, 2010

redtoffee @ 12:14 pm: Items on EBAY until July 6th in the last bargain auction for ME/CFS research
Items on EBAY charity auction until July 6th including:


Aaron Pritchett signed photo
4 Neighbours fan cards (Susan, Karl, Bridget, Toadie.)
Alan Fletcher (RARE signed photo)
4 Schalke 04 signed fan cards (Manuel Neuer, Felix Magath, Benedikt Howedes, Lewis Holtby)
John Stapleton signed photo (GMTV)
more...Collapse )

June 22nd, 2010

redtoffee @ 10:23 pm: 1 day left Christina Aguilera charity signed photo on EBAY until June 23rd
1 day left on signed Items on EBAY charity auction until June 23rd including:

Home and Away poster signed by 13 present and former cast members (inc Esther Anderson, Todd Lasance, and Jodi Gordon.)
Merlin season 1 Vol. 2 signed DVD (Katie McGrath, Colin Morgan, Bradley James and Angel Coulby.)
David Tennant (Doctor Who)
Christina Aguilera (singer)
Sir Ian McKellan (Gandalf - TLOTR)
Coldplay (band)
Jude Law (Cold Mountain)
many more...Collapse )

June 14th, 2010

redtoffee @ 07:09 pm: signed items on EBAY until June 12th for biomedical ME/CFS research
Signed Items on EBAY charity auction until June 23rd including:

Home and Away poster signed by 13 present and former cast members (inc Esther Anderson, Todd Lasance, and Jodi Gordon.)
Merlin season 1 Vol. 2 signed DVD (Katie McGrath, Colin Morgan, Bradley James and Angel Coulby.)
Aaron Pritchett signed Thankful CD - ONLY 99p!
Bonnie Wright (Ginny - Harry Potter)
Coldplay (band)
Jude Law (Cold Mountain)
Daniel Craig (James Bond)
David Tennant (Doctor Who)
Christina Aguilera (singer)
Sir Ian McKellan (Gandalf - TLOTR)
Roger Federer (Tennis)
Keira Knightley (Pirate's of the Caribbean)
Martin Sheen (The West Wing.)
Stephen Fry (QI)
Sara Ramirez (Grey's Anatomy)
Nigella Lawson (chef)
Kim Cattrall (Sex and the City)
June Brown (Eastenders)
John Partridge (Eastenders)
Alan Fletcher (RARE signed photo)
Sam Clark (Neighbours)
Jane Hall(Neighbours)
Pippa Black unsigned (Neighbours)
Natalie Blair unsigned (Neighbours)
Ben Shephard (GMTV)


Information and photos can be found on the WAMCARE blog here: http://wamcare.blogspot.com/2010/06/wamcare-auction-round-9-of-celebrity.html

The blog will be updated again with the next items due to be auctioned once this auction has finished. This is the last of the main auctions. The final auction will be for any unsold items as well as some unsigned items.

All profits from this auction are going to top quality biomedical research including a large share to the Whittemore Peterson Institute http://www.wpinstitute.org and ME Research UK http://www.meresearch.org.uk

Information about the auction and how to use EBAY and Paypal can be found on the WAMCARE blog here: http://wamcare.blogspot.com/2010/02/wamcare-auction-of-celebrity-signed.html

Most of the celebrity signed items can be found on our newly updated website here http://www.wamcare.org/auction.html

You can also find out more information about ME/CFS and why research is essential on our website.

The link EBAY shop is here: http://shop.ebay.co.uk/wamcare/m.html?_nkw=&_armrs=1&_from=&_ipg=&_trksid=p3686


Please spread the word! Thank you!



Laura Dunks – President and fundraising of WAMCARE

June 12th, 2010

redtoffee @ 12:12 pm: A few hours left on current charity signed items on EBAY until June 12th for biomedical ME/CFS
A few hours left on signed Items on EBAY charity auction until June 12th including:

Merlin season 1 Vol. 1 signed DVD.
Aaron Pritchett signed Big Wheel CD - ONLY 99p!
Dame Helen Mirren (The Queen)
Robbie Coltrane (Harry Potter)
The Saturdays (band)
Dame Judi Dench (James Bond)
Susan Sarandon (Thelma and Louise)
Sir David Jason (Only Fools and Horses)
Camille Coduri signed Doctor Who trading card.
Esther Anderson (Home and Away)
Carole Vorderman (presenter)
Amir Khan (boxer)
Carla Bonner (Neighbours)
Ryan Moloney unsigned (Neighbours)
Jane Hall unsigned (Neighbours)
Andrew Castle (GMTV)
Kirsty McCabe (GMTV)
Kevin Kuranyi (Schalke 04 footballer)
Heiko Westermann (Schalke 04 footballer)
Steve McFadden (Eastenders)
Alan Fletcher (RARE signed photo)
Paul Martin Canadian PM autopen



All profits from this auction are going to top quality biomedical research including a large share to the Whittemore Peterson Institute http://www.wpinstitute.org and ME Research UK http://www.meresearch.org.uk

Information and photos can be found on the WAMCARE blog here: http://wamcare.blogspot.com/2010/06/thank-you-to-everyone-for-your-support.html

The blog will be updated again with the next items due to be auctioned once this auction has finished.

Information about the auction and how to use EBAY and Paypal can be found on the WAMCARE blog here: http://wamcare.blogspot.com/2010/02/wamcare-auction-of-celebrity-signed.html

Most of the celebrity signed items can be found on our newly updated website here http://www.wamcare.org/auction.html

You can also find out more information about ME/CFS and why research is essential on our website.

The link EBAY shop is here: http://shop.ebay.co.uk/wamcare/m.html?_nkw=&_armrs=1&_from=&_ipg=&_trksid=p3686


Please spread the word! Thank you!



Laura Dunks – President and fundraising of WAMCARE

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