Tag Archives for " ME/CFS "

This Week’s M.E. News – Week 17, 2021

This week's ME News Headlines and Blog Updates from the community

It’s May, which means it’s M.E. Awareness Month, so to get things going, I’m sharing this week’s ME News Highlights and Blog updates from the ME Community. Although most of the news this week is focused on the awareness campaigns that will be running this month, there are some other interesting articles to read too.

Are you comfy? Got a drink or snack ready? I know how hard it can with brain fog to read or stay focused on long blocks of text, so I’ll do my best each week to summarise the latest ME News and Blog Posts into short, easy to read paragraphs for you.

Please let me know in the comments below if there is any way I can improve these posts to make them more accessible to you.

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Celebrating Life Despite Depression, Anxiety & ME/CFS – A Day In The Life of Jorja

A close up of half of Jorja's face, title reads: Celebrating life despite depression, anxiety and ME/cfs.

After a long break, I am happy to be resuming our twice-monthly guest interviews. This week we are meeting Jorja who has been living with Depression, Anxiety and ME/CFS for many years. This interview is part of an ongoing series where we interview people from around the world who share how chronic illness or disability has changed their lives and how they continue to find reasons to celebrate anyway. 

I hope this series will inform and encourage you and maybe help you feel less alone if you're dealing with something similar. If you'd like to be featured too, click here.

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This Week’s M.E. News – Week 3, 2020

A bunch of coral roses, title reads ME Community News. News Headlines and Blog Hightlighs, Week 3

​After a long break, I'm back with this week's ME News highlights and blog updates from the ME community. So make yourself comfortable and let's have a catch up with our fellow warriors and allies!

​Remember, if you find any of these posts ​helpful or interesting, please share them on your social media, it will help ​to raise awareness and eliminate stigma.

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This Week’s M.E. News – Week 43, 2019

A bunch of orange flowers with bluish leaves, Title reads: M.E. Community News, News headlines and blog highlights from week 43 of 2019

​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:

  1. Designated funding for ME research
  2. Experts to meet and decide on patient selection methods and criteria
  3. Funding ​to identify biomarkers
  4. Funding clinical trial networks and treatment trials
  5. 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.

Dr Myhill is training NHW practitioners in this treatment. Here's how you can get started on it >> Read More

​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

​Reclaiming Wednesdays

​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

A list of this week's MEcfs news

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A list of this week's MEcfs news

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A list of this week's blog highlights

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​More About Life With M.E.

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A crocheted twiddle muff with tassels and buttons on it lying on the carpet. Title reads, How to crochet s twiddle muff
A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?
Man holding his head in his hands. Title Reads, Where to get help when you feel like giving up. Helplines & Prayer Partners available 24/7 Worldwide.
Thank you for stopping by. Hugs, Char xx

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email chronically hopeful char at gmail dot com

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Supplements To Manage Chronic Fatigue And Pain

Pills lying on a table top. Title reads: Supplements to manage chronic fatigue and pain. Find out which supplements have helped me the most

I am often asked about the benefits of using supplements for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. People usually want to know which supplements I use for chronic pain or fatigue so they can have a better idea about where to start with their own supplement regime. Unfortunately, like everything else about this illness, we all respond differently, so what helps me might not help you the same way. 

Herein lies the beauty of sharing our experiences though - some of the things that are helping me the most are the things I was most sceptical about despite being recommended by others who had claimed success using them. This has taught me that even if I am sceptical, it is always worth trying something for a while if it might improve my quality of life. I hope this post will do that for you too.

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