Tag Archives for " ME/CFS "

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.

A pile of boxes stacked up next to a radiator. Title reads Moving to a new house, plus 12 tips to make moving easier
A collage of awareness pictures, Title reads: Where to find impactful M.E. awareness pictures
A crocheted twiddle muff with tassels and buttons on it lying on the carpet. Title reads, How to crochet s twiddle muff
In a dark room a hand is held up to block the light that is shining in. Title reads, Photophobia in ME and CFS. 20 Patients share their experience.
ME CFS Flares, How to cope BLOG
Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful
Thank you for stopping by. Hugs, Char xx

Let's Stay In Touch

My Chronic Life Pages: Facebook | Instagram | Twitter 
M.E. Awareness Pics: Facebook | Instagram | Twitter | The ME/CFS Community
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 
Support My Work: Buy My Art | Shop My Favourite Things
Or if you'd like to send me something, here's my Amazon Wishlist - Thank you!

email chronically hopeful char at gmail dot com

This blog was designed using Thrive Themes.

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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This Week’s M.E. News – Week 42, 2019

A selection of succulents, Title reads: M.E. Community News, News headlines and blog highlights from week 42 of 2019

​Time to catch up on the latest M.E. news headlines and blog updates from the community. So grab a cuppa and get comfy,​ there are many great articles to read this week!

*If you missed last week's round up, I'm sorry, that was my fault, I never finished writing it due to ill health, I will finish it off and get it published soon. There ​were some excellent posts published last week! You can find all ​my previous news posts here.

​This Week's M.E. News

​Here's this week's M.E. news summarised just for you. Please remember to share these articles on social media to help raise awareness, promote good science and end the stigma associated with Myalgic Encephalomyelitis. ​Team work, people!

Accelerating ME/CFS research, diagnosis and treatment

Dr. Suzanne Vernon from Bateman Horne Center has raised millions for M.E. research which has restulted in the publication of over 85 papers. This week she shares her 2-pronged approach to accelerating ME/CFS research ​for better diagnosis and treatment options.

The first prong focuses on biomarker discovery, almost 80% of their patients participate in research by providing biological samples which are used in studies worldwide. Bateman Horne is then able to supplement the scientific data with medical records to provide a bigger picture which they think might provide additional insight.

The second prong focuses on developing, preferably non-invasive, ways to ​objectively measure ​the various symptoms​ patients experience. Things like physical and cognitive function as well as unrefreshing sleep and orthostatic intolerance. For example, they are ​working on a wearable device that passively measures impaired function​​.

So far this two-pronged approach has attracted much interest and they have already partnered with ten ​research organizations and ​continue to attract new partners from the research, pharmaceutical and wearable technology sectors. >> Read More

​Also from Bateman Horne

​Race & ethnicity: building an inclusive movement

​MEAction continues their ​values and policy initiative, this week they interview Wilhelmina Jenkins ​who underlines the importance of building a movement that accurately represents the whole M.E. community.

Wilhelmina was completely disabled by M.E in 1983 while doing her PhD in Physics and has been a passionate advocate ever since.

​In this interview she explains why people of colour with M.E. are often ​left undiagnosed ​causing additional difficulties​ and the cultural differences that ​make people ​with M.E.​ ​in minority communities unnecessarily isolated and underserved.​ She also provides a few ​ideas on how we can make ​our advocacy campaigns more inclusive. >> Read More

Dr Myhill's Travelling Workshops for Ecological Medicine

​Bookings are now open for Dr Myhill's ​t​ravelling workshops. She'll be touring the country in her campervan from January 2020 and will be running these workshops for one week each month.

The workshops, which are based on Dr Myhill's book "Ecological Medicine", will be comprised of 10-16 people each​. The focus will be on any health conditions, not only M.E, and attendees are ​to bring along their medical history and test results as well as a laptop or tablet to take notes and develop their "illness management frame". 

​Dr Myhill will help each participant complete their ​frame in a way that provides a personalised management plan. There will ​be time for discussion and questions too. By the end of the day, participants will know what their symptoms mean and how to treat the ​underlying causes, these treatments ​will be logical, easily available and generally affordable. 

Workshops can be hosted by anybody, so patients or carers​ and other interested parties can get in touch with Dr Myhill's staff if ​they would like to have her come by​. >> Read More

​Llewellyn King interviews Dr. Ron Tompkins

​Here are my notes from the video which you can see below, I've focused on the M.E related content.

Ron explains that ​there ​is a lot of interest in the study of M.E. accross various medical and scientific disciplines. There are hundreds of scientists in the Harvard medical ​group which consists of 30 different ​institutions. They recently held symposiums which were organised for approximately 50 scientists and clinicians, but he had to turn away at least ​50 others who were also interested in attending.

​They also have affiliations with engineering or technical groups, including Stanford and MIT, so there are exciting opportunities to contribute to the field. The​y ​are collaborating with a facility which ​has studied ​neural inflammation, microglial activation, particularly in ​the brainstem in Lyme and Fibromyalgia patients, and they'd like to study this in ME/CFS too since there is so much overlap among these conditions.

​They have ongoing treatment programs for patients, but they do not have the resources to care for all the patients as it requires a huge amount of resources. So philanthropic interest is key to expanding ​those services and setting up centers of excellence.

Medical students are graduating with huge student debts and are ​unlikely to establish a practice that focuses on an illness like ME/CFS, especially if patients are unable to pay for their treatment.

Ron Tompkins' team ​has been working on inflammation, metabolism, pro​teomics, genomics and computational biology and for ​about 30 years he has also been studying how the body responds to stress. 

He believes the disease origin is complex, but has noticed ​similarities between his stress patients and M.E. patients. He points out that stess can come from physical injury, sepsis or infection or emotional ​triggers. Most people would return to a healthy state after a while, but M.E patients have immunological ​and metabolic problems ​that persist and fail to return to normal function.  ​

They are looking into what the difference is in skeletal muscle in ME patients at baseline and then again after exertion compared to healthy controls. He ​is amazed by the large number of young people who ​had been very active and suddenly fell ill, pointing out that they can ​often remember exactly ​when they fell ill.

Evidence for NICE: M.E. services in UK not fit for purpose

MEAction recently did a survey asking patients in the UK to describe their experience of ME/CFS services and treatments. The survey was created in response to NICE's request for evidence to help them with their new guidelines for M.E.

It covered topics such as recommended strategies, experience of clinics, cognitive behavioural therapy (CBT) and activity management.

A total of 1906 patients completed the survey and the results clearly show that treatments offered in the UK are not fit for purpose. They've made charts to show the outcomes for each section.  >> Read More

​Is ​exercise intolerance unique to M.E?

​Cort shares the results of a few studies which clearly show not only that exercise intolerance is unique to M.E. but also that post-exertional-malaise is ​different to exercise fatigue that other people experience.

The studies done usually involve ​a 2-day exercise test. In this test patients are required to use an exercise bike until exhaustion on one day and then again 24 hours later while various ​parameters ​are measured. 

​This test has generally been abandoned since exercise seems to benefit almost everybody no matter what they're suffering from, but people studying M.E. are using it to study and prove exercise intolerance.

​Studies have shows that people with all sorts of serious health conditions, including end-stage renal disease, heart failure, cystic fibrosis, pulmonary hypertension, ​MS and stroke can all bounce back on the second day and redo ​the exercise test without any trouble, some even perform better on day 2, but people with M.E. cannot.

​While most candidates recover within 24 hours and are able to complete the second test in the same way or even better on the second day, people with M.E's ability to function is still greatly diminished even 24 to 48 hours after exertion, and the decline is evident in almost every parameter measured. >> Read More

​Updates From M.E. Bloggers

The following people with M.E. ​have updated their blogs this week. I know they'd love to have a visit and some comments. If you find their content helpful or interesting, why not share the links on social media too!

​​Why did it take ​months to diagnose a broken ankle?

​Whitney went on holiday to Europe where she sustained an injury while hiking in Scotland. Being in chronic pain daily, she was able to continue her holiday, walking on her broken ankle, simply because she is usually in much more pain. The problem was that her doctors wouldn't take it seriously because of ​her stoic ​behaviour.

This week she talks about how ​we downplay our injuries because we suffer from chronic pain that is often much worse and how ​our behaviour affects the way our doctors and loved ones respond​, influencing our care and treatment. >> Read More

​When managing hospital appointments become your full time job

​Clare has managed to get her degree while chronically ill, but has not been well enough to sustain a job that makes use of ​her degree. This week ​as she gives us a look into her daily life, it becomes clear that managing a chronic illness, with regular ​visits to multiple hospitals and specialists, is really a full time job. >> Read More

A photo journey through the decades

dSavannah has been snapping pictures since she was little, this week she's sharing some of her photos in this beautiful and nostalgic collection. It includes old camera negatives, disc film negatives as well as her more recent photos taken on her iphone. >> Read More

​Learning acceptance and self love

​This week Carrie shares her journey of self-discovery, walking us through the feelings she had after diagnosis and the things she learned ​as a result of her illnesses over time and finally the difficult task of learning to love herself. >> Read More

When doctors are not so wonderful

​This week Mishka shares her experience of doctors. You'll see why she learned from a young age that doctors don't always get things right and that they're only human. She also shares the all too familiar story of her latest doctor who would rather dismiss her with a prescription than listen to her or explain her diagnosis or labs and why she calls him Dr Wonderful. >> Read More

​​E​xplore ​our garden with me!

​This week I'm taking you on a virtual outing through my garden. I've shared a selection of photos ​I took this summer on my occasional walks out in our little garden. I share how our garden evovled since we moved in last year and our first family BBQ in years and I also talk about my latest experiment in grounding.
>> 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.

A girl lying on her bed, writing in her jouornal. TItle reads: bullet journal helpful for people with chronic illness
Title reads Join The MEcfs Community, Social group for ME & CFS patients and carers. Photo of blue forget-me-notspin by Chronically Hopeful
Join the MAIMES campaign, Chronically Hopeful #MEcfs #pwME #ChronicIllness
10 Important Life Lessons learned from Chronic Illness, by Chronically Hopeful. A woman sits by the window, gazing out while holding a cup of tea. She has shoulder length hair and is smiling contemplatively.
Christmas lights and baubles in some branches. Title reads: How I survived Christmas despite Severe M.E. My tips for coping during the festive season
Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful
Thank you for stopping by. Hugs, Char xx

Let's Stay In Touch

My Chronic Life Pages: Facebook | Instagram | Twitter 
M.E. Awareness Pics: Facebook | Instagram | Twitter | The ME/CFS Community
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 
Support My Work: Buy My Art | Shop My Favourite Things
Or if you'd like to send me something, here's my Amazon Wishlist - Thank you!

email chronically hopeful char at gmail dot com

This blog was designed using Thrive Themes.

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