This Week’s M.E. News – Week 39, 2019
Hello lovelies! Scroll down for this week's M.E. news highlights and the latest blog updates from warriors in our community summarised just for you. Please share any of these articles if you find them interesting or helpful and why not leave a comment to let the authors know you stopped by. It's always encouraging to get feedback from our readers.
If you missed last week's good news, click here - there is much to be hopeful about!
This Week's M.E. News
Take a survey to aid NICE guideline review
NICE (The National Institute for Health and Care Excellence in the UK) is calling for evidence to aid in the guideline review, so MEAction has put together a survey on patient experience of the treatments offered to people with M.E. (Due 7 Oct 2019)
It's a simple 8-10 min survey about the treatment options and advice we were given when first diagnosed. It has multiple choice answers and space for personal notes and will be anonymous. Most questions are optional too. They ask that we complete the survey once for each treatment facility we attended. >> Read More
The vicious circles in M.E. and CFS
I call this illness the ME Monster because it really can be vicious. Here Craig Robinson, an M.E. warrior and Dr Myhill's co-author, explains some of these vicious circles that patients will experience and provides possible solutions to help us manage them. Some of these vicious circles are:
- Metobolic Syndrome - gut health imbalance due to modern day convenience foods causes poor energy metabolism and fermenting gut, weakening us and further inhibiting ability to cook nutritious meals.
- Patent Foramen Ovale - a common heart defect in M.E. causing blood to bypass the lungs resulting in poor oxygenation which in turn inhibits cellular function throughout the body.
- Mitochondrial Function - impaired energy metabolism in the motochondria means that all bodily functions are impaired, including our energy metabolising mechanisms which further depletes our energy.
- Oxygen Delivery / Hyperventilation - the low energy and oxygen levels trigger hyperventilation which in turn causes blood to become more alkali and sticky which inhibits cellular oxygenation even further.
- Magnesium Deficiency - ATP (energy) production is magnesium dependant, but low energy impairs magnesium absorption into cells making it hard to restore or maintain sufficient ATP production.
- Toxins - detoxification is inhibited in the same way nutrient absorption is inhibited by poor energy metabolism, meaning that toxins remain inside cells, while nutrients remain outside, further inhibiting function.
- Lactic Acid - poor mitochondrial function means people with M.E. exceed their anaerobic threshold too soon, as a result we get hyperventilation, burning muscles and further inhibited mitochondrial function.
- Look-alike Toxic Metals - fermenting gut results in absorption and accumulation of toxic metals, the body can mistake these for essential trace elements if the patient is low on these minerals, further weakening detox functions.
For more vicious circles and tips on how to avoid or manage them >> Read More
New research on the impact of M.E. in Australia
The Medical Research Future Fund will be funding new research on the impact of Myalgic Encephalomyelitis in Australia. Due to all the debate and misinformation over the decades, there is little data to speak of.
Emerge Australia will be a part of this new research. They want to know as much as possible about how many people are affected and the impact it has on patients, carers, the community, economy and health care system as a whole. With more accurate data they can better serve patients, whether that's with support or advocacy efforts. >> Read More
Surprising similarities between Overtraining Syndrome and Chronic Fatigue Syndrome
Studies into Overtraining Syndrome (OTS) have revealed that the condition, which affects athletes, is almost identical to ME or CFS in terms of symptoms and duration. The only obvious difference is that one is triggered by a virus, toxin or trauma while the other is triggered by physical exercise.
Some even suggest they might be two branches of the same disease. One affecting athletic types and the other affecting non-athletic types. >> Read More
What matters most to the M.E. community
Last November MEAction launched a poll to find out what is most important to the community. The poll was designed to help them clarify their values, tactics and positions going forward, to unify the community.
275 people took the poll and provided much insight on values, policy, tactics and position in relation to various topics such as accessibility, inclusion, disease definition, treatments, research, funding and more. MEAction has provided all the results and many of the comments patients sent in too. A very interesting read! >> Read More
You can follow the entire values and policy clarifying initiative here.
Dr. Ron Davis gives an update on latest M.E. research
Video below, but here are notes for those who cannot watch the video:
- Every patient has a gene mutation called IDO2 - so they're investigating what the gene does and what its function is in the disease. They have a hypothesis about it, they're calling it the Metabollic Trap hypothesis.
- They must aim to disprove it in order to test this hypothesis. Their hope is that this will clear the path to a cure.
- They have found that there is a compound, made in the gut, which is missing in people with M.E, it has the function of protecting the brain, so the lack thereof is causing neurological problems. Patients are not crazy, they have biochemical problems that could maybe be fixed.
- The goal would be to find a way to replenish these compounds that are missing in the body - this will probably not cure patients, but will make them feel better and these treatments will be easier to figure out than a cure, but they want to work on both the treatment and cure.
- These supplements will be in the form of drugs, so they will have to go through the drug approval process which takes long. Hopefully, because these are compounds that appear naturally in the body of healthy people, they will not take as long to be approved.
- The working group is a collaboration between scientists, who are dedicated to solving this disease, all sharing their ideas to help each other move forward.
- When they collect data, they have a website for researchers where the data is uploaded so that researchers around the world can access the data and study it. This means that professors who are good at analysis and physiology can study the data and come up with ideas without the expense of having to do the experiments and collect the data.
- Unfortunately it takes longer to get work published than to do the work, so this method speeds up the whole process because they can share data which they know is correct without waiting through the long process of first being published. This is the same process used in the Genome Project.
- Stanford Medical Centre is making their CFS clinic a multi-disciplinary clinic which will have various medical experts on site and will include collaboration with Dr Ron Davis' team. This way doctors and scientists can work together, sharing what works and come up with new ways to test things.
Updates From M.E. Bloggers
The following people with M.E. have updated their blogs this week. If you find their content helpful or interesting, why not leave a comment and share the links on social media too!
Penny takes us on a virtual outing to her peaceful place
A tree canopy above, an ivy carpet below, the cool breeze on your skin, dog happily bouncing ahead, sunlight shimmering on the surface of the water as it rushes under a wooden foot bridge... Just some of the scenes I imagine while reading about one of Penny's favourite places to go on her rare outings in her wheelchair. >> Read More
Rebecca shares how she explains M.E. to people
We've all been there, we meet somebody new or see somebody we haven't seen in a long time and they want to know about this illness that they don't really understand because we totally look fine... Rebecca is sharing a few dialogues which she usually uses depending on who is asking the questions. >> Read More
Jo explains why giving unsolicited advice is inappropriate
As somebody with chronic illness, many of us will understand the frustration of healthy people offering advice on treatments or even cures for our complex diseases when we never asked for any advice. Jo explains very clearly in this post why giving unsolicited advice is not only inappropriate, but can actually be invalidating and harmful. >> Read More
Sophie is sharing some of her tips for using a powerchair
Being unable to walk much is not easy, getting out of the house independently can make a big difference to one's mental health and wellbeing, so having a powerchair can be a huge asset. Sophie is sharing some things she has learned since hiring a couple of powerchairs to try. >> Read More
Anna shares how she recently accepted her need for help
This week Anna is sharing her personal struggle with accepting how much help she really needs and the moment she became brave enough to ask for the extra help. >> Read More
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