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Helen Hyland, Fundraising Manager, ME Association.
Charlotte is now the research correspondent for the ME Association.
She writes the popular research summaries for our website and has a canny knack of explaining findings from the latest research in a way that even I can understand.
She has kindly taken the time to explain why our Christmas Appeal for More Research for M.E. in 2019 is so important.
Background
Dr Charles Shepherd (Hon. Medical Adviser and Trustee) describes Charlotte as, “A real credit to the ME Association” and Russell Fleming (Content Manager) agrees, adding “We are incredibly lucky to have her.”
Charlotte Stephens graduating with a first in biochemistry.
Charlotte is 23 and has a first-class degree in Biochemistry from the University of Reading. She now lives in Cornwall with her parents and her cat, Tibby.
Living back at home and translating research papers wasn’t exactly the life she had dreamed of.
Charlotte had wanted to finish her degree then take a year out to travel (and run a half marathon) before fulfilling her dream of passing her PGCE to become a science teacher.
But that all changed because of M.E. Now she hopes to one day recover enough to hold down a part-time job in M.E. research, working on finding causes and effective treatments.
We sincerely hope that she can achieve this ambition. She would make a terrific addition to any M.E. research team.
In the meantime, Charlotte wanted to pass on her reasons for supporting the Ramsay Research Fund Christmas Appeal and why she thinks it is so important that we fund more research in 2019.
Life before M.E.
Charlotte was a model student. She was a high achiever academically but managed her time so meticulously that she was able to fund her studies through waitress work. She also found time for sports and hobbies, volunteering (with St Johns Ambulance), and to have an active social life.
She was very physically active (netball, swimming, running, and weekly gym classes including Zumba) and also a gifted musician having been voted ‘most likely to make it in the music industry’ at college.
At University, she was part of a songwriter’s group, sang in a choir and did regular open mic nights, as well as being part of the drama society.
Where it all changed
The central index of published M.E. research that Charlotte now helps maintain.
Towards the end of her term at University, Charlotte fell ill with glandular fever and, like so many others, never fully recovered. She was later diagnosed with M.E.
Thanks to the sterling support she received from her tutors, she still managed to graduate with first class honours from Reading University but the effort to finish proved too much for her health.
She crashed badly – so badly that waitressing, sport and even music had to be given up as just 3 minutes of piano playing would leave her in pain for hours.
Charlotte also lost many of her friends as they found it difficult to understand her illness and she struggled to keep up with any social activities.
Life now
Charlotte is focused entirely now on recovery. For the past two years, she has been trying various treatments, both conventional and alternative.
She made some small improvements and, with the support of a most understanding boyfriend, has even managed to travel a little.
She is not yet well enough to hold down a part-time job, but she is just about managing to volunteer in a local school for 1 hour each week.
Charlotte and the ME Association
I have often heard the ME Association being referred to as a lifeline – our aim being to support people with M.E. and that is exactly what we try to do. Charlotte admits that her M.E. had left her feeling ‘useless’ and with no ‘sense of purpose’.
We have Russell to thank for encouraging this wonderful young woman and for helping to give her back a sense of purpose. He told me:
“I received a phone call out of the blue one day from one of the occupational therapists at our local NHS ME/CFS specialist clinic.”
“She told me a little about Charlotte and asked if I could help give her a purpose with relevant work from the charity.”
“I spoke with our trustees and then I phoned Charlotte for a chat. She started last year as a volunteer but we were soon able to give her more work which she took to very well.
“Both Dr Shepherd and I agree that she has really taken to the role and has become a real credit to the the ME Association.”
Charlotte is clearly enjoying working with us and is relieved to have found a community where everyone understands what she is going through. She said:
“Working for the ME Association is amazing…”
“Working for the ME Association is amazing as they completely understand my illness, that I have good and bad days, and that sometimes things may take a little longer to complete.
“There is no pressure at all and I never feel the need to push myself as they understand that my health comes first.”
“I love my job as it is using my skills and degree to read about things that I am genuinely interested in and hopefully helping others by trying to explain the often-complex research.”
“It also means that I’m very up-to-date with all of the latest developments in our field.”
“I have had some exciting opportunities through working with the ME Association, such as attending the annual CMRC research conference and hope for many more.”
She told me that she has thoroughly enjoyed studying the ME Association’s Clinical and Research Guide (The ‘Purple Book’) and getting to grips with all the research and theories around M.E. It gave her a better understanding of her own illness.
She also found our downloadable leaflets on various aspects of M.E. (most written by Dr Charles Shepherd) very useful as her own doctor struggles to answer her queries and it isn’t easy trying to find clear and reliable information.
Charlotte now updates our monthly release of research abstracts and the central research listing, writes conference reports and has provided much of the content for our new research-related leaflets (to be released shortly).
CMRC Research Conference
Charlotte attended the 2018 CMRC conference (the 5th such research conference) and wrote a popular 22 page summary report all about it. She said:
The 2018 CMRC Research Conference Report by Charlotte.
“The CMRC conference was so inspiring and encouraging – particularly seeing the researchers all talking together, brainstorming and bouncing off of each other’s ideas.
“That’s what we need more of. There is so much research going on in so many different areas that we urgently need more collaboration to bring things together.
“It was also great to see some GP’s attending the conference, taking an interest in M.E. research.
“One of this year’s highlights was a talk by Dr Nina Muirhead. She has M.E. and is trying very hard to get the disease into medical school curriculums.
“It is so frustrating that doctors are currently not taught about M.E. in their training. The main source of information they have is the NICE guideline, which is over 10 years old, unfit for purpose and currently the subject of a major review.
“It was also very inspiring to see so many young researchers presenting, and I hope to one day be well enough to do that myself!
“It has become clear that there are several subgroups of patients within the ‘ME/CFS umbrella’, who have different disease pathologies and will therefore require different treatments; I don’t think there will be a ‘one size fits all’ cure.
The Ramsay Research Fund is supporting Dr Karl Morten and his team at Oxford University.
“Therefore, more research needs to be done into identifying these subgroups and studying them separately as I think this is having a negative effect on current research results.
“The developments in metabolomics are very promising, with recent preliminary results presented at the CMRC conference suggesting a defect in glucose metabolism.
“I look forward to reading the published results from Dr Karl Morten’s study, which has been supported by the ME Association Ramsay Research Fund.
“I’m also excited for the recent negative Rituximab trial to be published. I have some theories as to why it may not have worked and still hold hope for it to be a therapeutic drug for a subset of patients in the future.
The need for more research funding
Charlotte said:
“Unfortunately, one of the biggest drawbacks for M.E. research is funding. Although some high-quality biomedical research is being carried out, it is on such a small scale that it is hard to draw any solid conclusions.
“More funding is urgently needed in order for larger studies to be carried out; we need to be in the hundreds and thousands of patients, not in the tens. With increased funding, comes increased biomedical research and with it, increased hope for a better quality of life for us all!”
“Please support the ME Association’s Appeal for More Research for ME in 2019. I know that Christmas is an expensive time for many reasons, but please, do give anything you can spare to support the Christmas Appeal.”
“One day we will understand M.E. and because of your help, that day will come sooner.”
ME Association Ramsay Research Fund Christmas Appeal
Help us do more for M.E. research in 2019
If you would like to support our Christmas Appeal, then please:
Donate online via our JustGiving page or to start fundraising,If you have any questions about the Appeal, then please contact our fundraising manager, Helen Hyland.
Thank you all for your support. And thank you Charlotte for your thoughts. We do indeed share her hope that research will help thousands of people achieve a better quality of life. There’s still so much more to do, but we won’t stop until a cure is found!
This award is fantastic news and a great tribute to all members of the M.E. Biobank team who are involved in the collection, processing and release of blood samples to researchers who are now using them to research the underlying causes of M.E. both here in the UK and abroad.
Dr Eliana Lacerda, Dio Giotas and Shennae O’Boyle from the M.E. Biobank at the awards ceremony.
The ME Association Ramsay Research fund now funds all the basic running costs of the M.E. Biobank – which amount to around £80,000 each year.
Now fully operational, the M.E. Biobank, which is based at the Royal Free Hospital in London, has blood samples in storage from around 500 people – the majority of whom have ME/CFS, including a sub-group with severe M.E.
The M.E. Biobank also has blood samples from healthy controls and from people with multiple sclerosis – a neurological disease with a number of overlapping features to M.E.
Among the research projects currently being worked on at the Biobank is a major study into the role of infection and immune system dysfunction in M.E. Funding comes from the American National Institutes of Health and represents the largest ever grant for M.E. research in the UK.
The M.E. Biobank is also supplying samples for research that has been funded by the ME Association Ramsay Research Fund.
This includes mitochondrial dysfunction and metabolomics – from Dr Karl Morten and colleagues (University of Oxford) – and a new study – from Professor Jo Cambridge (University College London) and the M.E. Biobank team – examining links between immune system dysfunction and defective energy production at the cellular level.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association and Chair of the M.E. Biobank Steering Committee.
The CureME team at the London School of Hygiene & Tropical Medicine (LSHTM) is thrilled to have received an Honourable Mention for Biobank of the Year 2018, presented on Tuesday 27th November at the UK Biobanking Showcase in London.
Dr Lacerda receiving the award on behalf of the M.E. Biobank.
The Showcase is run each year by the UKCRC Tissue Directory and Coordination Centre, and comprised of a day of seminars and workshops to facilitate networking and infrastructure strengthening of UK bioresources.
The day concluded with the award ceremony for Biobank of the Year.
The UK ME/CFS Biobank (UKMEB) entered two case studies to demonstrate how the resource had been established with comprehensive patient engagement and involvement, and how it has led to high-quality research both nationally and internationally thanks to collaboration with external researchers.
Since its opening, the Biobank has enabled virology, immunology, metabolomics and transcriptomics at the LSHTM, University College London and the University of Oxford, as well as at collaborator sites in Europe, America and the Middle East.
The UKMEB was one of only two award-winners from among a strong field, with the committee praising its “significant research value and excellent patient engagement with the community.”
We would like to thank the UKCRC and scientist.com, sponsor of the awards, as well as the US National Institutes of Health and the ME Association for their continuing support of the UKMEB. Funding for the Biobank’s establishment was provided by the ME Association, as well as Action for ME, ME Research UK, and an anonymous donor.
However, our greatest debt of gratitude is owed to all of the people with ME who have given their time and energy to contribute to the Biobank and have supported us so much over the last seven years – thank you.
ME Association Ramsay Research Fund Christmas Appeal
Help us do more for M.E. research in 2019
If you would like to support our Christmas Appeal, then please:
Donate online via our JustGiving page or to start fundraising,If you have any questions about the Appeal, then please contact our fundraising manager, Helen Hyland. Thank you.
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Do you know what it feels like to live without anxiety? I mean to be truly free from all doubts and worries and live in a blissful state of the present moment?
It can be a tough thing to do, because there is just SO much that’s “out there” to stress over. But it can be achieved with practice and, of course, Tapping!
The other day I jumped on Facebook Live to offer a free tap-along on releasing anxiety. Take a few minutes to watch and tap with me!
Here’s a direct link to the video on Facebook
Tapping has been scientifically proven to lower anxiety by sending a calming signal to the parts of the brain that control the stress response in our bodies.
In The Tapping Solution App, we have lots of different Tapping Meditations that specifically address anxiety on a wide range of topics.
The App is free to download, with FREE meditations available to immediately listen to from each category.
What’s also great about the App, is that you have access to over a hundred (and growing!) meditations right in the palm of your hand, so you can use them “in the moment” when a specific situation pops up.
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Until next time…
Keep Tapping!
Nick Ortner
The post Release Your Anxiety with Tapping appeared first on The Tapping Solution.
Yes.
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Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
We have covered the use of this unlicensed product in relation to ME/CFS before.
This was back in 2015 when the Medicine and Healthcare products Regulatory Agency shut down production at Immuno Biotech in Cambridge and urged patients who had taken the product to see their GPs.
A further disturbing news report appeared last week on the BBC that relates to proceedings at Southwark crown court and the prosecution of Immuno Biotech founder, David Noakes.
“Noakes, 65, of Waldershare, Dover, pleaded guilty to charges of manufacturing, supplying and selling the unlicensed medicine and money laundering. He is expected to be sentenced next week.”
“Only four of the 17 patients did not complain of side effects after taking the human blood-based product – said to be derived from GcMAF, a cancer therapy treatment, the judge was told.”
“One customer said she went into “toxic shock” and “almost died numerous times”, with two ambulance trips and “endless ER visits”.”
“Others described headaches, nausea, and abdominal pain, side effects Noakes described as “negligible” for people suffering “complicated” ailments.”
“Sixty-five per cent of people taking GcMAF improved, he added, rising to 85% if they took 10 or more vials of the product.”
“On Wednesday, the court heard from a member of a self-help group for people with chronic fatigue syndrome based in Chester.”
“Joan Crawford, a chartered chemical engineer, told the court about half of the 16 members who took GcMAF in 2012 experienced positive changes, while a quarter experienced no change, and just “a couple” felt worse in the short-term.”
“During the hearing Noakes defended GcMAF as a treatment for a number of conditions, but on Tuesday said he no longer claims it cures cancer.”
In 2015 I stated that the ME Association was aware that people with ME/CFS were taking this product, but that no research evidence existed for its safety or efficacy in the treatment of this disease. This remains the position today.
This product is very speculative and comes with serious concerns about its safety. It is not something we can recommend. If you are considering this product – or others like it – then please speak to your GP in the first instance.
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Ughhhhh
Helen Hyland, Fundraising Manager, ME Association.
So, by now, you’re probably heartily sick of hearing about Black Friday. This all started in America – as the day after the Thanksgiving holiday which is traditionally regarded as the start of Christmas shopping.
And, if you wondered why so many shops have been promoting deals – now you know – they’re all competing to attract Christmas custom.
And then there was Cyber Monday – which is apparently the day that online retailers promote their bargains, but the cynics amongst us would probably describe as the day we all hit the internet when we’ve spent the weekend fruitlessly trudging the streets and turn to looking online instead.
Here at the ME Association, we’re keener on the Americans’ other idea – that of Giving Tuesday. It’s tomorrow: Tuesday – 27th November.
#GivingTuesday is a movement to create an international day of giving at the start of the Christmas holiday season.
The ME Association is just one of thousands of UK charities getting involved.
As our friends at Benevity tell us, #GivingTuesday, is a global day of giving, and a powerful opportunity to engage your colleagues and your community in the causes that matter to you.
Your employers will like it too – because it shows that they are fostering a purpose-driven culture. Because in a time when we all need to see more good in the world, with you, people can be the good.
The MEA Christmas Appeal – More research, more hope…
What better way to celebrate #GivingTuesday than with a gift of hope?
Because by donating to the ME Association Christmas Appeal, that is exactly what you will be buying – hope for 250,000 sufferers of M.E. around the UK who are desperate for a medical test, for a treatment or better still a cure for the horrid illness that is M.E.
Whether you bake good stuff, make good stuff, donate good stuff, tweet good stuff or even say good stuff – how you support M.E. is totally up to you!
Perhaps a bake sale, or a pyjama day, or simply make a donation – anything that you can spare – to our Christmas Appeal for more biomedical research in 2019.
Then share the message to your friends across social media. Click here for a few more fundraising ideas from #GivingTuesday.
The PayPal Matched Giving Fund
That’s right. PayPal has offered to match up to £50,000 in total donations to UK charities for #GivingTuesday.
The offer runs from 00.01 GMT to 11.59 GMT on Tuesday 27th November, and the ME Association is included!
It’s a first-come-first-served offer, and all donations are made free of costs. It’s a great opportunity to support your favourite charity. We could receive up to £5,000!
As always with matching offers, there is the small print to consider (for example, you have to use the donation platform or PayPal App and not the main website or other payment platforms).
Whatever you do, however much you give (of your time, talents, or ‘treasure’), thank you so much for thinking of the ME Association.
And Happy #GivingTuesday to one and all!
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Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
We are very sorry to have to report the death of Dr Anne Macintyre – a doctor with a longstanding personal and professional involvement with all aspects of M.E.
Unfortunately, in addition to having the disease herself, Anne had other serious health problems and had been in poor health for quite some time.
She died peacefully on Saturday November 24th at her home in Tiverton in Devon.
A friend and colleague
Dr Anne Macintyre.
Anne will always be remembered as an extremely kind and compassionate doctor who helped large numbers of people with M.E. over many years.
She helped them obtain a diagnosis, to get appropriate management advice and she provided support when they were battling with the DWP over benefit entitlement.
She will also be remembered for her book ‘M.E. A Practical Guide’ which was extremely well received and is still regarded by many as being one of the best.
Anne was a medical adviser to the ME Association for many years and conscientiously carried out this role until she was unable to continue because of ill health.
At this point she became a Patron of the ME Association.
Anne will be very sadly missed as both a friend and colleague.
Fond memories
Jenny Wilson, who became a close friend to Anne and lived close to her in Devon, spent much of the past few months supporting and helping to care for her. Jenny was with Anne during her last few days and kindly wrote this for us on Sunday, 25th November.
“I am writing to share the sad news that my friend Dr Annie Macintyre, Patron and past medical adviser to the ME Association, died during the night.
“I have known Annie since 1987, when my friend Dr Richard Sykes and I began the Bristol ME Association Support group. Annie lived in Bristol having just moved from Bath and she contacted the group.
“However, it wasn’t until the late ‘90s that we became close friends when she took me to her home after giving me a medical assessment as I was too severely ill to care for myself. From then on, we maintained a continuous friendship, phoning each other most days.
“I used to refer people to her when they phoned me for advice about ME if they needed diagnosis or other help which only a doctor could provide. We used to joke that we ran an underground medical system.
“Annie, as many of you know, wrote one of the first books for patients on ME and it proved very popular. She was hoping to update it, but her life over the past few years was, instead, taken up with travelling to such places as St Helena to visit familiar haunts where she had been the island’s doctor.
“Annie especially loved visiting the island of Lundy off the North Devon coast with friends and, being a hardened Scot, enjoyed the Spartan………and very windy……life there.
“Before she became ill, she had also been a ship’s doctor and then specialised in eye diseases and spent time working abroad.
“In recent years, she had a camper van that she loved to take around the country and which she continued to drive even when she became very ill over the past year. She also, on a number of occasions, visited the Irish ME groups of which she was a patron.
“Annie suffered from Rheumatoid Arthritis and a couple of years ago she developed serious lung problems; a complication of the condition. In April she was offered a new drug treatment, but unfortunately, she had a severe reaction to it and it initiated a very rapid decline.
“The last months have been very difficult as Annie, with her usual courage, bravely struggled with her increasing breathlessness. During much of this time, she remained in her flat, which is not far from me, with her two cats.
“I have spent a lot of time over the past months sitting beside her bed or talking with her a few times a day on the phone when not able to be with her.
“Last Friday, while we were chatting, she experienced an abrupt and serious deterioration from which she never recovered.
“The last few days were very challenging, but she became more peaceful by Thursday. I was planning to sit with her today, but last night Annie quietly slipped away.
“I will greatly miss her.
Jenny Wilson.
Documentary Video
Book of condolence
We are going to open a book of condolence for Anne at the ME Association where messages can be recorded.
If you would like to contribute to this by email, please send your message to: admin@meassociation.org.uk
If you would like to send a written message for this book, or a condolence card that can be forwarded to Anne’s family, please send this to:
Gill Briody, The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF
Thank you.
Charlotte Stephens, Research Correspondent, ME Association.
Introduction
Click to download our 7-page summary review.
Linda van Campen and Frans Visser from the Netherlands have just published a study that examined stroke volume and cardiac output in ME/CFS. It confirmed earlier findings from a smaller study that changes occurred in these two key cardiac measures despite normal tilt-table results (Timmers et al., 2002).
Both studies found reduced cardiac output and stroke volumes during a tilt table test in ME/CFS patients compared to healthy controls. However, these patients had normal tilt table results, meaning their heart rate and blood pressure did not change significantly enough to be diagnosed with orthostatic intolerance.
The authors of the earlier study suggested that these findings were due to deconditioning, but in this new, larger study, Van Campen and Visser showed they were not as they found no difference in results between different disease severities.
If it were a case of deconditioning, the cardiac measurements would be worse in the more severely affected compared to the mild, as they have poorer physical functioning.
What made this study better than the previous one?
What were the two key measures found to be different?
Cardiac output = The volume of blood pumped by the heart per minute.
Stroke Volume = The volume of blood pumped by the left ventricle of the heart per heartbeat.
Both of these measures usually decrease upon standing. However, they were found to decrease more in the patients with ME/CFS, compared to the healthy controls.
Continued…
This research review is available for free.
Click to read online or to download.
The MEA Ramsay Research Fund Christmas Appeal
We want to invest in more research in 2019 and we need you help to do it.
If you would like to support our Christmas Appeal, then please:
For more information please visit our Christmas Appeal webpage. And if you have any questions get in touch with Helen Hyland or Head Office. Thank you.
Morganite or Pink Emerald is a peach or Pink Beryl stone that brings Divine Love into your life. A heart and higher heart chakra stone that heals women emotionally and physically, helps relieve guilt & shame.
Helen Hyland, Fundraising Manager, ME Association.
Please remember M.E. when you’re online Christmas Shopping.
You wouldn’t think that you could make a huge difference, but our wonderful fundraisers have raised over £7,000 through easyfundraising alone.
And more people every day are using the new Amazon Smile which makes a donation to the ME Association from the amount in your basket.
Please think of your favourite charity when you are shopping online – for Christmas presents, holidays, and even the Christmas grocery shop.
You can even make the ME Association your ‘favourite’ charity on Ebay and round up your payment at the checkout.
For more information including how to register and other ideas for easy ways to fundraise, please visit the Get Involved section of our website.
Thank you.
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Helen Hyland, Fundraising Manager, ME Association.
In this interview, Dr Shepherd explains why M.E. research is so important, and why he is asking for your support for the Ramsay Research Fund Christmas Appeal.
Helen writes:
Dr Charles Shepherd, 2018 BBC Newsbeat.
Keeping up with Dr Charles Shepherd when he is in full flow is almost impossible. His enthusiasm about research into M.E. is infectious.
He knows so much, he’s involved in so many different areas, and he’s so eager to tell you all about it. All at the same time.
He’s like a fountain bubbling over with knowledge. And you never quite know where your conversation will take you.
Dr Shepherd is the ME Association’s medical adviser, trustee and spokesman. He is a passionate advocate for and about all things to do with this devastating disease.
He works relentlessly – and on a voluntary basis – lecturing, being interviewed by the media, providing medical and research information, campaigning, networking, and leading vital research via the MEA Ramsay Research Fund.
Our conversation about M.E. research (and the need for more of it) took us from an orchestra, via elephants, to jigsaws and mountains.
From which you’ll understand that research into M.E. (myalgic encephalopathy/encephalomyelitis) is no easy subject to grasp and why this piece should perhaps be subtitled “M.E. Research for Dummies” – and I freely admit I’m the dummy!
Download the full interview
Dr Shepherd explains the research we are funding, and what we know about M.E.
So, what did I learn?
I asked what research has taught us so far. Dr Shepherd used the “3P’s” to explain distinct stages of how M.E. might develop: predisposition, precipitation and perpetuation.
He said that there is a growing body of evidence that suggests people in some families are predisposed to getting M.E. because of their genetic makeup. And whilst many cases of M.E. are precipitated (or triggered) by an event – usually a viral infection (but also trauma, vaccination, or exposure to toxins), undue physical or mental stress at the time can also play a part in some instances.
An orchestra?
M.E. is an illness that is perpetuated by the interaction of a number of components that include:
It is this perpetuation that makes M.E. “the last medical enigma of the 21st century”. It is an illness that affects many interrelated parts of the body; something that happens in one place, will affect other parts as well.
The 2018 RCGP conference.
Dr Shepherd likened the body to an orchestra: all the different systems (i.e. brain, heart, gut, immune system) have a part to play and, with M.E., if something isn’t quite right in one system, then this will affect other systems if not the whole body too.
M.E. research has brought us great advances in knowledge, but we still are some way from piecing together the jigsaw to see the complete picture. To do that, more research is needed. There’s no escaping this hard fact…
You can’t just produce one positive test result, you need to retest and then test again… Only once independent research has produced the same robust and consistent results, can we all move forward to the next stage…
Research and clinical trials
The MEA Ramsay Research Fund has invested over £1million in M.E. research and still has a key part to play; supporting projects that confirm hypotheses or advancing new ideas.
Dr Shepherd specifically asked that I explain here just how closely he works with the other trustees at the ME Association, and other medical and research experts, to encourage and promote new research that advances our understanding.
The more work that is done at this level, the greater our overall knowledge and understanding, and the sooner we shall be able to see that big picture. That is why we are asking for your support for our Ramsay Research Fund Christmas Appeal – so that we can fund more projects than ever before in 2019!
Clinicians wanted!
But we won’t just need funding. We also need to find clinicians who are:
Clinical trials take time to perform. “We’re probably talking about 5 years at least” from start to finish for a clinical trial of just one drug, Dr Shepherd told me.
And there are so many drugs out there that could be tried, once we have an accurate picture of which bits of the body are likely to be most responsive to drug treatment.
That’s why we have a duty to undertake our research beforehand – as thoroughly and as comprehensively as we can. Because there is little point in wasting valuable time, money and resources or in raising the hopes and expectations of M.E. sufferers unnecessarily.
How you can help us to move forward.
I’ll leave Dr Shepherd to have the last word…
“Until we have a better understanding of the complex underlying disease mechanisms in M.E., we cannot move forward.
“The Ramsay Research Fund is closely working with three centres of excellence – at Newcastle, London and Oxford – to further that understanding.
“We are also working hard to get new experts into the field. The more research that we can do, the closer we will get to the answers that we are all searching for.
“I know that this is an expensive time for so many reasons, but please give anything you can spare to support the Ramsay Research fund Christmas Appeal.
“One day we will understand M.E. and because of your help, that day will arrive that much sooner.
“Thank you.
Download the full interview
Dr Shepherd explains the research we are funding, and what we know about M.E.
The MEA Ramsay Research Fund Christmas Appeal
If you would like to support our Christmas Appeal, then please:
For more information please visit our Christmas Appeal webpage. And if you have any questions get in touch with Helen Hyland or Head Office.
From us all at the ME Association, we hope you enjoy a safe and comfortable Christmas and more hopeful New Year. Thank you.
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