Picasso Marble stimulates creativity & artistic gifts. Attracts new friends & makes change easier. Brings deeper meditation & aids contact with spiritual beings in the higher realms.
by Brian Vastag and Beth Mazur
In the fall of 2009, one of us, Beth, was hit by an illness she suspects was H1N1 flu, which was circulating then. In 2012, the other, Brian, developed a sudden fever, which his doctors said was also likely of viral origin.
Neither of us recovered, and we’re both disabled to this day.
The long-term illnesses that can follow viral infections can be devastating — and are devastatingly common. In 2015, the nation’s top medical advisory body, the Institute of Medicine, estimated that between 800,000 and 2.5 million U.S. residents live with the illness or illnesses awkwardly named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An estimated three-quarters of these cases were triggered by viral or bacterial infections.
Now, as a new pandemic virus is burning through the world and causing many deaths, researchers are raising alarms that the novel coronavirus and the covid-19 disease it causes will also leave in its wake a potentially large population with post-viral problems that could be lifelong and, in some cases, disabling.
At the National Institutes of Health and elsewhere, scientists who have been studying post-viral ME/CFS are seizing the opportunity to focus on covid-19 patients. They want to understand what biological factors separate those who regain their health from those who remain sick.
“We want to look at who recovers and who doesn’t,” said Avindra Nath, the head of clinical neurology at NIH’s Clinical Center in Bethesda, Md., who is gearing up to study covid-19 patients. “It’s quite possible some will never get their health back.”
To read the full story, click HERE.
Brian Vastag was a science reporter at the Washington Post from 2011 to 2014. Beth Mazur is co-founder of #MEAction, a patient advocacy group that has chapters round the world. The couple are married and live in Hawaii.
Reducing the risk of catching coronavirus if you have ME/CFS
Don’t forget! The ME Association has a free four-page leaflet which includes a 10-point guide to reducing your risk of infection. You can download the leaflet HERE.
Later this week – tomorrow or on Wednesday – we will be publishing an update to our Covid-19 employment leaflet.
This will cover the changes to furloughing, etc. that were announced by the Chancellor of the Exchequer last Friday evening. The revision will also include a section on how to carry out a workplace risk assessment.
The revisions are being written by our hon medical adviser, Dr Charles Shepherd. We will blog the changes here as well as signposting visitors to a free download of the latest leaflet.
The ME Association Registered Charity Number 801279
The post Researchers warn covid-19 could cause debilitating long-term illness in some patients | Washington Post | 30 May 2020 appeared first on ME Association.
Birthstone list for each month of the year is quick & easy. See Birthstone Chart with your months birthstone. See ancient, modern and traditional birth stones, pictures and meanings of birthstones.
Fuchsite is Green Muscovite Mica. Known as The Healers Stone as it's meaning relates to how it aids healers. Good to use in meditation. Helps allergy, encourages restful sleep, aids contact with nature spirits.
Black Obsidian Stone aids spirit contact & the gift of prophecy. They cleanse and protect your aura from psychic negativity. Strong grounding & psychic protection energy.
BINGO! 😉😊
Witches Finger Quartz aids tact & diplomacy. Aka Magdalena Stone. Unique crystals with many minerals included. Their energy aids tactful & diplomatic speech & improves communication. Use them in meditation to attract helpful spirit guides & teachers.
Tony Britton, Fundraising and PR Manager, ME Association
There’s nothing like a good cup of tea to set you up for the morning! But, as Hannah Collins told us, she didn’t know how much she missed it until she went caffeine-free to raise money for the ME Association during ME Awareness Week.
“There’s nothing quite like a nice builder’s brew in the morning. So, as soon as the week had was over, I put the kettle on and had a cup of my favourite – Yorkshire Tea”, said Hannah, a 28-year-old mortgage underwriter who lives in Sheffield.
Hannah was living and working in Edinburgh and making the most of every minute until she became ill three years or so ago.
At first, she floundered around not knowing why her health was going downhill so quickly. She cut down her work hours to see if she could cope better. That didn’t work. “I was down to working one day a week and trying to live on Universal Credit”, she said.
Life in Scotland’s capital became miserable and it was hard to save anything while living in an expensive city.
Cutting her losses and now too ill to look after herself, she moved back to her parents’ home in Sheffield in 2018.
In some remarkably good strokes of fortune, she says she quickly found really serious support with obtaining a diagnosis and advice on how to manage her symptoms from her GP, the infectious diseases unit at the Royal Hallamshire Hospital and finally the specialist ME/CFS clinic at the Michael Carlisle Centre, off Osborne Road.
“My mum and dad, Graham and Jane, have also been wonderful. They’ve always been there for me,” said Hannah, who has a Master’s degree in English Literature from Edinburgh University.
The caffeine-free challenge? “Everyone with an M.E. diagnosis knows that it is important to maintain a good, balanced diet and avoid overdoing certain things. Alcohol is an obvious one.
“In my case, one of my vices is Coca Cola and I have been known to drink quite a lot of tea. So I thought – go for a week without, see how things go!”
The week went by. Hannah made £250 on her fundraising page and her employer promised to match her total. The ME Association are so grateful to you both for your support as we struggle to survive during the coronavirus crisis.
Hannah remains very proud of herself for sticking by her promise to lay off the caffeine. She may have marginally improved her health that week.
But, after a week away from her favourite brew, that first cuppa was worth the wait. Mmmmm, it was so good!
If you’d like to show your appreciation of Hannah’s fundraiser, please make a contribution to JustGiving page.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
The post You can take the girl out of Yorkshire – you can’t take Yorkshire out of the girl! | 28 May 2020 appeared first on ME Association.
Charlotte Stephens, Research Correspondent, ME Association.
We show below brief summaries of the research studies about ME/CFS that have been published in the last week, followed by the abstracts from those studies.
This information has been included in the monthly update to the central Research Index which is freely available as a download.
The Index has now been updated to include all studies up to the end of May 2020.
This is an A-Z of the most important published research studies and selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis and/or chronic fatigue syndrome (ME/CFS).
You can use it to easily locate and then read any research in a particular area that you might be interested in, e.g. epidemiology, infection, neurology, post-exertional malaise etc.
You can also find the Research Index in the Research section of the website together with a list of Research Summaries from the ME Association that provide lay explanations of the more important and interesting work that has been published to date.
ME/CFS Research Published 22nd – 28th May 2020
This week, 2 new research studies have been published:
1. The EUROMENE research group conducted a review of studies looking into the prevalence and incidence of ME/CFS in Europe. They found three studies in which the prevalence ranged from 0.1-2.2%, however, they concluded that studies on prevalence and incidence in Europe are scarce and highlighted the need for epidemiological studies to be carried out.
2. Researchers from Johns Hopkins University in America looked at whether the widely-used formula to estimate an individual’s anaerobic threshold (55% of predicted maximal heart rate for age), which is used for pacing using a heart rate monitor, was accurate in comparison to measurements taken from Cardiopulmonary exercise testing (CPET).
After testing this is on 90 ME/CFS patients, they concluded, “Formulae generated in an attempt to help those with ME/CFS exercise below the anaerobic threshold do not reliably predict actual heart rates at the lactic acidosis threshold as measured by a cardiopulmonary exercise test.”
ME/CFS Research references and abstracts
1. Estevez-Lopez F et al. (2020)
Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology.
Journal of Clinical Medicine 9 (5).
Abstract
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe.
We conducted a primary search in Scopus, PubMed and Web of Science for publications between 1994 and 15 June 2019 (PROSPERO: CRD42017078688).
Additionally, we performed a backward-(reference lists) and forward-(citations) search of the works included in this review. Grey literature was addressed by contacting all members of the European Network on ME/CFS (EUROMENE). Independent reviewers searched, screened and selected studies, extracted data and evaluated the methodological and reporting quality.
For prevalence, two studies in adults and one study in adolescents were included. Prevalence ranged from 0.1% to 2.2%. Two studies also included incidence estimates. In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce.
Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. To overcome the shortcomings of the current state-of-the-art, EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control & Prevention−1994, Canadian Consensus Criteria, or Institute of Medicine criteria
2. Van Campen CL et al. (2020)
Heart Rate Thresholds to Limit Activity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing.
Advances in Physical Education 10 (2).
Abstract
Introduction: Based on the hypothesis that oxidative metabolism is impaired in ME/CFS, a previous study recommended a pacing self-management strategy to prevent post-exertional malaise.
This strategy involved a prescription to maintain a heart rate below the anaerobic threshold during physical activities. In the absence of lactate sampling or a cardiopulmonary exercise test (CPET), the pacing self-management formula defines 55% of the age-specific predicted maximal heart rate as the heart rate at the anaerobic threshold.
Thus far there has been no empiric evidence to test this self-pacing method of predicting heart rate at anaerobic threshold. The aim of this study was to compare published formula-derived heart rates at the anaerobic threshold with the actual heart rate at the lactic acidosis threshold as determined by CPET.
Methods and Results: Adults with ME/CFS who had undergone a symptom-limited CPET were eligible for this study (30 males, 60 females). We analysed males and females separately because of sex-based differences in peak oxygen consumption.
From a review paper, formulae to calculate maximal predicted heart rate were used for healthy subjects. We compared the actual heart rate at the lactic acid threshold during CPET to the predicted heart rates determined by formulae.
Using Bland-Altman plots, calculated bias: the mean difference between the actual CPET heart rate at the anaerobic threshold and the formula predicted heart rate across several formulae varied between -28 and 19 bpm in male ME/CFS patients.
Even in formulae with a clinically acceptable bias, the limits of agreement (mean bias ± 2SD) were unacceptably high for all formulae.
For female ME/CFS patients, bias varied between 6 and 23 bpm, but the limits of agreement were also unacceptably high for all formulae.
Conclusion: Formulae generated in an attempt to help those with ME/CFS exercise below the anaerobic threshold do not reliably predict actual heart rates at the lactic acidosis threshold as measured by a cardiopulmonary exercise test.
Formulae based on age-dependent predicted peak heart rate multiplied by 55% have a wide age-specific variability and therefore have a limited application in clinical practice.
ME Awareness Month – May 2020
Read the stories and announcements from ME Awareness Month.
The Lost Years
 |
 |
 |
Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
The post The ME Association End of Week Research Round-up and Research Index Update | 29 May 2020 appeared first on ME Association.
The Lost Years by Leanne Swift.
So, I have M.E. but you probably wouldn’t have a clue there was anything wrong if you see me out and about.
“When it got to its worst I had hallucinations that nearly caused me to crash my car….”.
I’m good at hiding it, and make up hides the grey pallor when I’m in pain as well as the bags under the eyes. I’m also stubborn and don’t want people to coddle me, so I tend to not complain.
In fact, only those closest to me that I really trust would know there’s anything serious going on.
Diagnosis
I was diagnosed about four and half years ago. It came after a bout of food poisoning, I just never seemed to fully recover from the extreme fatigue.
Eventually after pushing through for a couple months (because there was nothing obviously causing the tiredness) I ended up sleeping all the time.
I wasn’t working, I was getting palpitations, I was in excruciating pain constantly, pain killers did nothing to help, my memory was shocking, concentration virtually zero and I even struggled to talk coherently at times.
When it got to its worst I had hallucinations that nearly caused me to crash my car…. That’s when I knew this really wasn’t normal and went straight to the doctors. This was beyond exhaustion.
After a lot of tests to eliminate many conditions and a referral to the local NHS M.E. service I was finally diagnosed. It was a relief to know this was real and what it was, but heartbreaking because there was no cure…. My life was never the same again.
After 10months off work and much support from my then partner, the M.E. hospital service and GP’s, I had learnt to pace. I’d built up some strength and energy, I was hopeful I would get back to normal and work full-time.
I had been declined Personal Independence Payment (PIP), so I obviously wasn’t that sick, and after all, this was just me being tired, I could fight through that, or so I thought.
Financial concerns
Sadly, after months of very slowly building up, starting at just a couple hours once a week at work and then increasing it to 16hours a week; it became apparent that was my new limit, I needed a whole rest day after doing a morning shift.
A morning’s work left me so wiped out I struggled to get out of bed. At that time only my partner knew the truth of the struggle, to everyone else I was OK. I put on a face and pretended I was good. It was lonely, heartbreaking and led to depression. The truth that this was a chronic illness was finally hitting home.
The biggest problem became finance. I am currently working 16 hours a week, while I get a small top up to my wages from Universal Credit, I’m not entitled to any other disability related benefits because apparently I do not qualify.
This means my income is incredibly low. I can’t afford a place of my own, council housing is not readily available, and so I house share. That has its own challenges and where I live isn’t ideal; it’s a big house and I have to help maintain it.
Living with ME
Leanne with her friend on a better day, sat watching the local carnival.
I regularly have days when I can’t even shower because the fatigue is so bad. I just about manage to grab food, often pre-made food I’ve brought such as soup and ready meals, and then I have to stay with my feet up in bed, or I get swollen ankles.
It hurts to be upright for too long and even watching TV can wear me out. And yet, I’m one of the lucky ones. I have good days and manage to hold down a job, and I’m grateful for that.
Another battle is the knowledge that people are thinking that this is just laziness, that I’m just a bit tired; we all get tired after all. Some people even think I’m making this up. That hurts, mostly because I want nothing more than to be OK, I want to work so I can afford holidays, a nicer car, my own home.
But I just can’t. The physical impact of work is severe, I just don’t shout about it. Depression is a real part of living with this condition and anxiety as well, especially as when I catch a virus, or get a chest infection it can be so debilitating.
I’m always worrying, pre-planning to the nth degree, trying to figure out if it’s safe to go somewhere in case I can’t cope or risk catching a bug. This slightest Illness can put me back to square one of being bed bound.
Welcome support
This fact became only too apparent recently when I went down with a flu-like virus, that led to a chest infection. I struggled to breathe, and I was not coping. I was sleeping all day, unable to get myself food or to sit up.
I was saved by a lovely friend at church whose daughter also has M.E. She had me to stay and for two whole weeks got me food and let me sleep and made sure I had lifts to appointments.
It was the first time I’d had someone other than my ex-partner understand what this illness was really like.
That virus caused me to be off work for two and a half months. My employer is phenomenally supportive, and I’ve now gone back on a phased return. After one morning back, I’m now in bed having been awake 4 hours but unable to get up. My legs feel like lead, my head hurts and moving feels like it’s sapping the life out of me.
But I made it back and I know after a rest day it will be a little bit better at least, I have hope and it feels like there is some energy now that I can use. It’s hard to explain if you have never had M.E. just what having zero energy really feels like.
Yet here I am, blessed to have a few very good and dear friends who support and encourage me and offer help when needed; lucky to have an employer flexible enough and supportive enough I can hold down a part-time job.
I’m also extremely fortunate that my GP understands this condition. Many people aren’t that lucky, and their doctors don’t even believe they’re really sick.. There’s still so much prejudice against people with M.E. in the medical community.
I’ve just been awarded a blue badge for the car, a little thing that will make a huge difference (even if I have to deal with judgemental people). I am living life as best I can. It sucks, it’s draining, there’s never a day I feel like I have slept well, I’m still always in pain and often can’t recall simple words.
But I am one of the lucky ones. I can still do so much compared to others with this condition and that is why I will always be trying to raise awareness of this life changing, life limiting illness called M.E.
Covid-19 and Self-isolation
I’m used to being alone and not doing much or going anywhere, but at least normally friends can visit freely and I can make it out for coffee and a chat and of course I can manage to work part-time.
Work alone brings such a sense of purpose and achievement as anyone with M.E. who can work, will tell you. Being able to go out and earn even a part-time wage brings so much independence and self-worth.
And then there’s church. My faith is a huge part of my life, it’s where I get the hope and strength to fight each day and carry on despite the symptoms of my illnesses.
Severe Asthma
Covid-19 is especially worrying for people with severe asthma…
But now there is Covid-19, and because of my brittle Asthma and M.E. I’m in isolation.
This isn’t normal isolation though, this is no going out, no company coming over, no physical contact, and it’s tough.
At the time of writing I am only on day two of isolation and I’m already realising what that’s going to mean.
The stress of planning to get food and essential errands completed, has left me wiped out and there’s going to be nobody to come over to help or give me a hug when I’m feeling downright awful.
There’s going to be no church meetings, I can’t work, but I’m one of the lucky ones and I’m still being paid… but it’ll be the basic rate, no extra hours or way to earn a little extra. So, for the foreseeable future my income is going to be even less than my normal low rate.
Worse though is the fear of getting this nasty coronavirus. I know if I get it I could be in serious trouble, especially with the Asthma, but even with M.E., getting such a serious virus could spell the end of being able to work, and that I would really hate.
Trying to keep rational is tiring, so I’m isolating, washing hands, cleaning like crazy when I have enough energy, crashing straight after, ending up in bed, but trying to remain positive.
Free downloads
Social contact
Distraction is going to be key. I have some simple craft and colouring lined up, I have movies and TV to stream, some easy-to-read books and, most crucially, social media and messaging to keep in contact with friends and family.
Already social media is proving to be a big help and encouragement. I don’t know how I’m going to feel by week 3 or 4 but at this point like everyone else, I’ll take each day as it comes!
My advice would be to order your medication in good time, there are services that post to your door (I use them and they’re a God send!).
Don’t be afraid to ask for help shopping – there are amazing groups of people locally setting up to do just this for the vulnerable, and friends really do want to help if they’re able.
Take each day as it comes and do what makes you happy, but most of all stay connected – use Facebook, texts, emails and phone calls – we all need that contact.
ME Awareness Month – May 2020
Read the stories and announcements from ME Awareness Month.
The Lost Years
|
|
|
Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
The post ME Awareness: Living with ME, Self-isolation and Severe Asthma, by Leanne Swift | 29 May 2020 appeared first on ME Association.
ME Research: It’s a small world by Ffion.
In every issue of ME Essential magazine we feature the lovely ‘Poetry by Ffion’. Here, she talks about her support of various ME research charities, about Dr Melvin Ramsay, and the hope offered by research investment around the world…
FFION ORIGINAL POEMS These poems are dedicated to people with M.E. and Fibromyalgia, but everyone is welcome!
I have a degree in English and French and love languages, literature, writing, art, nature and, more recently, card-making!
I also used to love opera, film, theatre, concerts, walking, socialising and, especially, travelling. Until my life changed totally when diagnosed with M.E. and, subsequently, Fibromyalgia.
I’ve always loved writing. But Ted Hughes said: “Poetry needs a reason”. It would appear M.E. is my reason.
A couple of years ago, poems started to pour out! It started with poems about living with M.E. I sent these to a few good friends who were all very complimentary.
Lockdown Life by Ffion, “My hair is a day’s activity. Hard work – washing, rinsing and drying…”
However, they also said that, whilst their understanding of what it must be like to live with M.E. was enhanced, they were also grateful that most of the poems had some humour and lightness, wit, or irony!
As they said: “It’s such an awful disease, and people have such an awful time, it would be too unremittingly sad if there was not a touch of light in your poetry somewhere.”
I then started writing poems on other topics – not just on “M.E., FM and Me”, but also on nature, children, animals, gratitude, humour, etc….
Early in 2018, my husband decided to set up a poetry website for me and I went “live!” (Thinks… “Hmm, if I could only go live in other areas of my life!”)
Russell from the ME Association has been very supportive of my Poetry Website and has published a few on MEA Facebook. I had a surreal experience one evening, when I was checking my Website hits.
Breakdown by Ffion, “So, while everyone else is driving by, I’m collapsed by the side of the road…”
The hits for one poem: To A Good Man were going up and up and up as I watched! I didn’t realise at the time, but Russell had posted it on MEA Facebook, so I was watching the hits in real-time. They eventually reached over 1,600 – my best-selling poem ever!
Caroline from the ME Association has also been very supportive, publishing a poem in every issue of ME Essential magazine. So, Russell and Caroline, thank you!
Alongside poetry, I used to make cards for friends’ birthdays. But, once I became very largely housebound, their birthdays weren’t keeping up with my output. So, I started making cards, to donate to charities for them to sell to fund-raise.
ME Research
I made cards for various charities and then, one day, I came across The Open Medicine Foundation in California, who conduct research into M.E. and related chronic complex diseases, such as Lyme’s and Fibromyalgia. They have Centres in Stanford, California; Harvard, Massachusetts; and in Uppsala, Sweden.
I started ‘chatting’ to OMF via email. Sadly, all my ‘chatting’ is done via email now, as people exhaust me – ‘twas not always thus…. I asked OMF if they would like me to make some ‘corporate’ cards. They would!
Respite by Ffion, “I absolutely have to escape. I need to, I must go out today…”
They would send them to donors and patients. So, I make these cards and I’m delighted to say that they love them. I receive wonderful feedback, and this is a joy to me. So, my thanks to OMF.
Poetry and card-making have been lifesavers. I can do them as and when I am able and, as my bed is only a couple of feet from my desk, the commute is ideal!
But it then struck me that, whilst I was doing voluntary ‘work’ for OMF, I was not doing anything specific for the ME Association. As I’m largely housebound, I can’t take part in fundraising activities, so I decided I would just cut to the chase and make a donation to The MEA Ramsay Research Fund!
In one of those instances of happenstance, I received an email from Angelina in America. She has had M.E. for eight years. She had organised an ME Awareness Concert in her home town and OMF had sent her one of my cards, to thank her.
She loved the card and had emailed to thank me. We started chatting (as you do!) and she mentioned that she was a neuro-endocrinologist. Her voluntary work for national charity, The Solve ME/CFS Initiative, was as a research advisor to their Ramsay Grant Program. My curiosity was piqued. Surely there couldn’t be two Ramsay’s?
Dr. Melvin Ramsay
Dr Melvin Ramsay helped establish The ME Association which was founded in 1978 and he remained closely involved with the charity until his death in 1990.
“Is that our Dr. Ramsay?” I asked. It subsequently turned out that it was! The ME Association has, of course, the Ramsay Research Fund, because Dr Ramsay helped establish the charity in 1978 and was closely involved until his death in 1990.
Had she read his book? She hadn’t, so I sent her a copy. She was very impressed with it and ordered 45 copies to send to ME contacts and researchers globally! Angelina’s husband is a doctor, now a Board Member of the ME organisation, so, between them, they have contacts and connections with ME organisations world-wide.
Dr. Ramsay’s book, “Myalgic Encephalomyelitis and Post-Viral Fatigue States: The Saga of Royal Free Disease” – admittedly, not the snappiest title(!), but a riveting read – is available from the ME Association. If you haven’t read it, I would urge you to do so.
I know many M.E. people have difficulty reading, as do I now – thank goodness for audio-books – but it’s only about 60 pages, and can be read in small chunks, which is how I read it.
Some people with M.E. are disbelieved, even by friends and family. If you are in this unhappy position, do buy Dr. Ramsay’s book – it will help overcome this disbelief!
“Dr Ramsay’s description of the classic symptoms of ME has not been bettered,” Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
It’s a tragedy that our good Dr. Ramsay died just before the roll-out of the Internet. How different things would have been for people with M.E., had he lived, and published his research on the online.
Now, he is being read and appreciated globally. How I wish he were still here to see the fruits of his labour. Thank you, Dr. Ramsay, and the ME Association.
Finally, I was delighted recently to see that the New Zealand ME Organisation posted OMF’s link to my cards and poetry on their Facebook page.
I don’t think I can reach out any further around the world now, without meeting myself coming back!
I was also delighted to see posts from the ME Association on the New Zealand Facebook page. Thanks to the internet, our ME community is becoming a global village.
Everyone is talking to everyone else and, with so many good people on our side, things will change for us. Heartfelt thanks to all the good people who are working so hard for us.
ME Awareness Month – May 2020
Read the stories and announcements from ME Awareness Month.
The Lost Years
|
|
|
Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.
The ME Association
Ramsay Research Fund
We are a national charity working hard to improve the lives of people devastated by an often-misunderstood neurological disease.
We believe biomedical research offers the best hope to people affected by M.E. If you would like to support our investment then please donate to the Ramsay Research Fund.
Just click the image opposite to visit our JustGiving page for single donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
The post ME Awareness: “Ted Hughes once said: ‘Poetry needs a reason’. It would appear ME is my reason to write,” by Ffion | 29 May 2020 appeared first on ME Association.
Read about Quartz Formations & the benefits of the way crystals are configured. The advantages for healing & spiritual growth are explained & you can learn to identify specific configurations.
Boli Stone are high vibration crystals that bring spiritual light into the body. Meaning & Use: Use them in your daily meditation to connect with the Goddess to stimulate spiritual growth.
