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.
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!
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.
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:
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
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
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:
>> Read More
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
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:
This study will provide the opportunity to identify possible drug treatments for M.E. >> Read More
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
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!
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
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
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
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
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
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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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.
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!
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
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
Bookings are now open for Dr Myhill's travelling 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
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. They 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, proteomics, 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.
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
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
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!
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
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
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
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
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
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
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It's that time of the week again! M.E. news headlines and blog updates from the community. There's been a lot of buzz this week with bold M.E. activism in the EU parliament, the Cochrane review being released and flu season around the corner for those of us in the North. Get comfy and enjoy!
If you've missed my previous summaries and would like to catch up with older communty news, click here!
The paragraphs in this section might include some of my own thoughts in italics, feel free to add your own thoughts in the comments section at the bottom of this page too!
Please share any of these articles if you have found them interesting or helpful - it will help us to raise awareness.
This week Evelien Van Den Brink, a dutch citizen with Severe ME, spoke to the Committee on Petitions in the European Parliament while lying on her stretcher. She made a powerful appeal to members of parliament, asking them to fund biomedical research into M.E. Her appeal was met with applause and a decision to keep the petition for funding open although the minister's reply was that they do not allocate funding to specific diseases. >> Read More & Watch Evelien's appeal
EU citizens can sign the petition requesting biomedical research funding here.
Cochrane is an independent review agency of international researchers and organisations. It evaluates the quality of medical evidence and their reviews are highly respected in the medical field.
This week the ME community was once again disappointed by the Cochrane review on exercise therapies for ME. The main reason being their conclusion that exercise therapy "probably has a positive effect on fatigue in adults with CFS". They say that they reached this conclusion due to lack of evidence to support otherwise.
It is important to keep in mind that their review was based on evidence related to patients diagnosed with the very broad Oxford criteria which focuses on fatigue as the defining symptom, not PEM. So this review may not apply to people diagnosed with other criteria such as the CCC or ICC which require PEM/PENE as a mandatory symptom and likely includes patients with all sorts of conditions which have fatigue as a key symptom. Cochrane has announced that they will launch another review in 2020 as they realise this one did not resolve the issue for ME patients. >> Read The Review
Here are the responses from some of the leading ME charities:
You can now watch or listen to the individual talks from the OMF-sponsored Community Symposium on the Molecular Basis of ME/CFS that recently took place at Stanford University. Unfortunately transcripts are not yet available, but will be coming soon. >> Go To Playlist
Doctors, nurses and social workers, can receive continuing education credits by watching Unrest. This CME program, in partnership with MEAction, is available through the American Medical Women’s Association and Indiana University School of Medicine.
ME Action launched a great initiative through which patients and allies can invite their local health care providers to participate in this program to earn extra CME credits by sending hand-written postcards. It's called Postcards To Doctors. >> Read More
Emerge Australia have created a leaflet to help school nurses better understand M.E. and how they can help the pupil and the school better manage the condition. It includes facts about M.E. and how it affects a patient and lists recommended adjustments that can be made at school to accommodate the child with M.E. You can download the leaflet here or read more here.
Whether or not to get the shot is a very personal choice, some people with M.E. seem to find it beneficial, while others say it made them worse. In the M.E. community there seem to be 2 distinct groups of people: those who fall ill constantly, picking up every bug going around, and those who don't seem to pick up another virus after falling ill with M.E. Personally, I'm in the second group and have never felt the need for extra protection from the flu. Below are some articles that could help you decide:
There are no clear answers as to whether of not you should or shouldn't have the vaccine if you have M.E. The NHS does however provide free shots annually to those who are at higher risk of complications if they get the flu. This covers people with pre-existing conditions, including neaurological conditions such as M.E.
The ME Association has updated their leaflet about the flu vaccine, you can download it here and speak to your doctor about the options or read more here.
Gertrude U Rey from Virology Blog is explaining the reasons in favour of getting the flu shot and says that although both vaccinated and unvaccinated people can fall ill, the most severe cases are usually those who were not vaccinated. >> Read More
Passionate ME advocate, Dr Sarah Myhill, made a complaint to the General Medical Council (GMC) about the PACE Trial authors last year and they recently rejected the complaint. Dr Myhill tried to obtain the evidence base for their rejection, and has been consistently denied proof of evidence for their decision. She then complained to the Information Commissioner's Office (ICO) and they have upheld her complaint.
The ICO has given a Decision Notice to the GMC. The GMC is now required to release the evidence on which it based its decision not to investigate the PACE authors. If they don't, they are to admit that their decision was not based on any evidence at all. If there is no evidence base, Dr Myhill will take their decision not to investigate the PACE authors to the High Court for a Judicial Review. >> Read More
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!
Clare has spent the past 9 years being pushed in wheelchair, dependent on others to get her around, but last month she was able to go on a little holiday with her family to the coast and this time she could move about more independently on her new powerchair. This week she's telling us all about her adventures with Frog. >> Read More
Being a very rational and logical thinker, Ali was not used to even recognising her natural instincts about things. It is something she has learned since becoming ill with ME. This week she is sharing some of the ways she has learned to hear and trust her instincts when making decisions. >> Read More
Blinding is the process by which trial participants and therapists are kept unaware of who is reveiving the treatments and who is not. This process is meant to prevent placebo effects and result bias which comes when you are expecting a certain outcome. This week Skeptic shares the fascinating history of, and highlights the importance of, blinding in randomised, controlled trials. >> Read More
People with M.E. often hear the comment "it's all in your head". Harry Potter asked Dumbledore once "Is this real? Or has this been happening inside my head?" and he replied "Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?"
This week Whitney shares her thoughts on the subject and uses that scene from Harry Potter to illustrate her point. She's also sharing a few responses she will use next time she is told "it's all in your head". >> Read More
Corina has loved making dolls and puppets since she was a young child. This week she shares her story, how it all started, how illness affected her ability to teach puppet-making and how she finally adapted her methods so that she could continue making puppets and teaching others to do the same. >> Read More
A couple of weeks ago we saw Naomi's first post in this series on the British Association of CFS/ME (BACME) guidelines on ME. This week she is focusing on the guidelines' incorrect assumption that deconditioning is a key factor in the ongoing symptoms of ME and their recommendation for incremental pacing and graded activity as a treatment, as well as their failure to address other issues relating to severe ME. >> Read More
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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!
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
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:
For more vicious circles and tips on how to avoid or manage them >> Read More
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
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
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.
Video below, but here are notes for those who cannot watch the video:
click for info about the fundraiser, giveaway & the foundation we're supporting
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!
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
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
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
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
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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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!
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