Tuesday, 31 May 2016

#Millions Missing global day of action for ME

'#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.

On May 25th 2016, #MEAction is a global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief'.

Demonstrations have taken/will be taking place in Washington DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne and Ottawa.

We travelled up to London to support the demonstration outside of the Department of Health:
http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ (opening speech given by the organiser of the London event).

Unfortunately many people were too unwell to attend, so instead were able to send a pair of their shoes in their place. My intention had been to read the tag on all the shoes (explaining what the owners were missing from), but I admit that after only reading three I didn't carry on as I found it just too upsetting, especially as there were over 350 pairs laid out on the pavement.



My husband's shoes to represent how much the disease affects his practise of the martial art aikido that he has been studying for over 20 years.



I spent the time handing out leaflets and talking to any of the public that showed further interest. It was quite an emotional day for me, hearing about other people's experience of the disease and how it affects them and their loved ones. I felt that it was an important event to attend, as it was a way for me to show my support and actually feel like I am able to help and take action. I think that family and friends without the disease are needed there to help on the day, and I was quite touched by the kind comments that I received at the end by other attendees.



This was the first time that events such as these have been organised for this debilitating disease and I really hope that they have helped raised more awareness.

Interview with Dr. Ron Davis at San Francisco:
(Professor of biochemistry and genetics at Stanford school of medicine, and director of the Stanford Genome Technology Centre)



http://www.openmedicinefoundation.org/the-end-mecfs-project/

6 comments:

  1. I hope this raises awareness of this issue and something is done about it to improve the heath and life of those suffering from it.

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    1. Thanks very much, Steve. Sadly the people with it have a pretty low quality of life & it hasn't been taken seriously as a disease in the past, so hopefully with more funding & research we will get somewhere.

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  2. Anita, sorry to hear your husband has CFS. I got sick with CFS in 1992 and struggled on for 3 years getting told "it's glandular fever" (not true) and "you're just a little run down (!!!) Take a holiday " - this at a time when I was struggling to keep a roof over my head! I finally self-diagnosed CFS and read up on it and tried various things, most of which had no effect. The one thing that did help was taking mega doses of antioxidant vitamins - A, B-50 complex, C, E. This helped relieve the crushing fatigue but didn't affect the other symptoms, so it's not a cure. From memory I was taking 5000IU of beta carotene (vit A), a B tablet, 1 gram C and 400IU of natural vit E morning and night.

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  3. (continued) I also discovered that my relapses could be triggered by even small amounts of alcohol, however the relapse occurred not the next day but on the second day, making it hard to spot the connection. For example I had 2 glasses of champagne one New Years Eve. Jan 1 I was fine, Jan 2 I was too ill to go to work. So I quit drinking alcohol altogether. Interestingly if I forgot to take my vitamins I would likewise crash on the second day. My theory is that the alcohol was depleting my body of the vitamins - it's known to do that with B vitamins. The body has a greater than normal need for vitamins because it is battling an infection.

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  4. (continued) What did provide a (partial) cure was long-term antibiotic therapy for Lyme Disease. If you read up on the symptoms of Lyme they are identical to CFS and also to fibromyalgia. My belief is that most CFS & FM cases are actually undiagnosed Lyme (I was!) I managed to get to see an infectious disease specialist who was trying to prove that Lyme Disease exists here in Australia. Originally I was on IV antibiotics but oral doxycycline works just as well with less hassle and expense. I take 100mg doxy 3 times a day. At first you don't see any response then a few weeks down the track you suddenly realise you no longer have one of your symptoms eg back pain or tendonitis. Gradually all your symptoms resolve until you're almost normal. I wish I could say I was cured, but every time I've hoped I was finally cured and gone off the antibiotics I've gradually seen the first symptoms come back. For me those are fatigue, tendonitis and inflammation and pain at the base of the spine. However, I've never let it get to the depths I was in after I first got sick.

    I don't know if your husband actually has Lyme, but neither do the doctors. There are NO good tests for Lyme despite what some doctors will tell you (my tests were ambiguous) The whole field of Lyme diagnosis and treatment is a political battlefield with the US health insurance companies and their medical shills trying to weasel out of paying for expensive long-term therapy. Unfortunately this has influenced the CDC guidelines and too many doctors here in Oz take them as gospel. In my opinion if you have the symptoms and they respond to antibiotics then you have Lyme.

    To sum up, try to find a doctor who will treat your husband for Lyme with LONGTERM doxycycline therapy - you need at least 2-3 months to see the full effect. Don't let them fob you off with a couple of weeks worth. The Lyme borrelia is extremely slow replicating, unlike most bacteria, so 1 or 2 weeks of abx kills only a few and leaves most untouched. I can't guarantee that it will "cure" his CFS but what have you got to lose? Only his disease.

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