Brrr... It's been so cold here in the UK this week. It's the perfect weather to wrap up in a soft blanket with a hot drink and catch up on some community news! As usual, I've summarised this week's top articles about Myalgic Encephalomyelitis as well as the latest blog updates from some of our fellow warriors. Enjoy!
This Week's M.E. News
Please share any of these articles on your social media accounts - this will help raise awareness and eliminate stigma by highlighting ongoing good science and current advocacy campaigns.
MEAction launches new campaign and petition
The MEAction network has this week launched the "Not Enough For ME" campaign which will focus on 5 items they want addressed by the NIH now:
- Designated funding for ME research
- Experts to meet and decide on patient selection methods and criteria
- Funding to identify biomarkers
- Funding clinical trial networks and treatment trials
- Address stigma and the lack of clinicians which impede research
They are leading this community campaign in order to push the NIH to action. They say that after 30 years of neglect and stigmatization, the community is in crisis and needs action - they need relief now. Promises and recommendations are no longer acceptable without action. >> Read More & Sign The Petition
Reprogram your immune system with micro-immunotherapy
Micro-immunotherapy was developed in the 1970's and is still widely used in Europe today. It helps patients to reprogramme their immune system by taking small doses of bio-identical messengers of inflammation such as cytokines, growth factors, neurotransmitters, hormones and certain nucleic acids which produce anti-viral effects.
This treatment is used in any condition of acute or chronic inflammation caused by chronic infection of a virus, allergy or autoimmunity. It can be safely combined with other treatments and is really helpful for severe patients who are intolerant to most other treatment options.
Three new grants fund biomedical research in the UK
This week the ME Association announced that their Ramsay Research Fund was able to make 3 new grants for biomedical research into M.E. The RRF, which has already invested more than a million pounds in biomedical research, is completely reliant on donations and membership fees.
The three grants will provide much needed funding for:
- The UK ME/CFS Biobank - ensuring a steady supply of blood samples to researchers worldwide.
- Dr Karl Morten and the University of Oxford - allowing scientists to continue their search for a link between blood plasma abnormalities and dysfunctional energy production in people with M.E.
- Dr Keith Geraghty and the University of Manchester - analysing what happens to people with M.E. during the time between onset of their symptoms and getting a diagnosis. The data collected will be used in the development of the new NICE guidelines.
>> Read More
Urging businesses to sponsor M.E. training in schools
The recent House of Commons Education Committee Report on Special Educational Needs and Disabilities (SEND) made it clear that there is a lack of funding holding back the implementation of training for SEND staff in schools.
Stripy Lightbulb, an online training organisation that focuses on educating the pubilc as well as businesses, healthcare professionals and educators on the realities of M.E, is urging business to acknowledge the crisis and sponsor SEND training in schools. >> Read More
Uncovering the origin of POTS
Postural Orthostatic Tachicardia Syndrome is common in M.E. patients and involves the cardiopulmonary and peripheral vascular systems, which are controlled by the autonomic nervous system (ANS).
Through cardiopulmonary exercise testing with iCPET measurments, they have found that people with M.E. appear to have a preload failure (PLF) pattern at maximum exertion. Patients fall into two groups, Low Flow and High Flow Phenotypes. Some possible causes are:
- Low Flow group: either low blood volume or a failure of the ANS to move blood from the venous side to the arterial side of circulation.
- High Flow group: either reduced oxygen delivery (or reduction of use by the mitochondria), or what seems to be a shunt from the arterial to venous side in the peripheral circulation.
This study will provide the opportunity to identify possible drug treatments for M.E. >> Read More
Long-awaited recognition and research into M.E.
The Canadian government recently announced a $1.4-million grant to fund Alain Moreau's research. This comes after his grant application was denied just 3 years ago when they insisted that M.E. was not a real disease.
His research includes numerous scientists and physicians from accross Canada as well as 200 M.E. patients from Quebec who form the largest group of regularly tested patients in the community. Moreau's research focuses on the changes that happen at a cellular lever under mild physical stress.
This week CBC News covered the story and did a great job in explaining the condition and the difficulties patients and researchers face. >> Read More
Updates From M.E. Bloggers
Here are this week's blog updates from our fellow M.E. warriors. I'm sure they'd appreciate a visit and even some comments to let them know you stopped by. If you find their content helpful or interesting, please share the links on social media too!
Learning lessons from nature in Autumn
Julie realised that her motivation seems to dip at the same time every year. This week she shares a lesson she has learned from nature and why she feels at peace and content with her diminished drive to be creative and get things done. >> Read More
Supplements to reduce chronic pain and fatigue
This week Char is sharing her entire supplement protocol. Find out which supplements have helped her come off all her prescription painkillers as well as helped reduce fatigue and brain fog. >> Read More
Celebrating the joys of Autumn
Sue is sharing all the fun ways she and her family celebrate this new season. From family outings to pumpkin spiced food and of course halloween, she's included lots of photos too. >> Read More
Anna highlights the difficulties caused by weekly treatment or therapy sessions, how much preparation they take and how much time we need to recover from them. She also shares her personal struggle to find some dedicated "me time" despite being isolated with chronic illness. >> Read More
10 must read health related books
This week Jo shares her 10 favourite books on health. They cover a range of topics from patient experience of M.E and Mental Health to Doctor's and Nurse's experience at work. >> Read More
Handy tips for when you're out in a wheelchair
Sophie is sharing some great tips for wheelchair users. She's found some products that help make those rare outings easier and more comfortable. >> Read More
What to do when doctors refuse to do tests or help?
Brett shares Bella's latest visit to the ER. She has been in excriciating pain and is at high risk for infection. The IV pharmacy has still not helped them and the ER doctor refused to do tests - just sent them on their way. >> Read More
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