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Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
NICE Guideline on ME/CFS: Diagnosis and Management
This is a summary of the stakeholder’s workshop that was held on Friday 25th May 2018 to discuss the current version of the new NICE guideline scoping report.
Introduction
The preparation of the NICE guideline scope and the stakeholder’s workshop is an important event in the development of the new NICE guideline on ME/CFS.
NICE arranged this workshop to enable stakeholders in the new guideline to learn about the status of the guideline development and to discuss the content of the current draft of the scope.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The scope is basically a summary that has been prepared by NICE which covers the topics that will be included in the new clinical guideline.
The workshop was attended by around 60 stakeholders – comprising a mixture of charity representatives, local support group representatives, patients, parents and carers of people with ME/CFS, local NHS service providers, and health professionals with an interest in ME/CFS.
Among the ME/CFS experts present were Dr Eliana Lacerda and Dr Luis Nacul (from the ME/CFS Biobank), Professor Jonathan Edwards, Dr Nigel Speight, Dr William Weir and Dr Paul Worthley.
We were split into groups of about 12 people with the first part of the meeting devoted to short presentations from members of the NICE guideline team. The main part, lasting around 2 hours, was devoted to discussions on each table about the content of the draft scoping report.
I will concentrate on information that had not already been conveyed at the inaugural stakeholder meeting in January 2018.
Welcome and introduction to NICE – Philip Anderson (PA), Clinical Adviser at NICE
PA welcomed everyone and set out the agenda for the afternoon.
Aims of the workshop – Rupert Franklin (RF), Senior Guideline Commissioning Officer at NICE
RF outlined the purpose of the guideline scope:
The main purpose of the workshop was to:
Joining the guideline development group
NICE Get Involved Our Committees
Regarding applications to join the committee that will prepare the content for the new guideline: this will involve both health professionals and lay representatives and recruitment will start in June.
Applications can be made by visiting the ‘get involved’ section on the NICE homepage. Anyone with an interest in ME/CFS can apply to join the guideline committee and the aim is to have 4 lay member representatives.
NICE want all stakeholders to help spread the word to people who would make a good contribution to preparing a new and patient friendly NICE guideline on ME/CFS.
Vacancies for lay and professional membership of the ME/CFS guideline committee should appear on the NICE website by 21st June and the deadline for applications will be 19th July (see schedule below).
Public Involvement Programme (PIP) – Victoria Thomas (VT), PIP at NICE
VT explained how the PIP supports the individual service users and carers and their organisations/charities in the work of NICE by:
Role of the NICE Guideline Committee – Norma O’Flynn (NF), Chief Operating Officer for the ME/CFS guideline
NF explained several important practical points relating to timeline and membership of the new guideline committee.
Important diary dates are:
Regarding recruitment to the committee: NF explained that two key appointments have now been made – Dr Peter Barry as Chair and Baroness Ilora Finlay as Vice Chair.
Both were present at the meeting and introduced themselves to each of the stakeholder tables during the discussion session.
Composition of the new committee
This is possibly subject to change following the consultation process. Worth noting that there is, at present, no psychiatrist on this list, however a liaison psychiatrist at the meeting did make a case for including one:
In relation to lay members, the following options are being considered:
Presentation of Scope and Key Discussion Areas – Peter Barry (PB), Committee Chair
Dr Peter Barry, Chair NICE ME/CFS Guideline Committee.
Dr Peter Barry, the new Chair of the guideline committee introduced himself and outlined some of the key inclusions in the new guideline:
The guideline will also cover:
Key areas that would not be covered:
Group Discussion – Facilitated discussion in small groups
Baroness Ilora Finlay, Vice Chair, NICE ME/CFS Guideline Committee.
The final and main part of the workshop, lasting approximately two hours, consisted of each table going through the draft scope subject by subject and discussing how they wanted to see the new guideline deal with these key aspects of diagnosis and management.
In addition to several people with M.E., a parent of a child with M.E., and the NICE guideline facilitator, there were three other health professionals – Professor Jonathan Edwards, and two doctors (from psychiatry and infectious diseases) from ME/CFS hospital-based services in our group.
Concerns, observations and suggestions made by our group included:
Who is the guideline for?
Collection of evidence
Nomenclature and definition of ME, CFS and ME/CFS
Clinical assessment and diagnosis
Co-morbidity
Management
Omissions
The group identified and queried several other important aspects of management, most of which are in the current guideline, but do not appear in the current scope. These include:
Round-up and closing remarks – Philip Anderson
The meeting finished with the facilitator from each table providing a summary of the main points to emerge from discussion at that table.
The key conclusion from our table was that future treatment recommendations must be personalised and tailored to individual circumstances and that there is no place for the current ‘one size fits all’ approach to management involving only CBT and GET.
Overall, I felt this was a very constructive and encouraging meeting with a real effort being made by senior people at NICE to listen to and act on the views of people with ME/CFS.
It was also encouraging to see a good selection of physicians who have the support of the patient community playing an active part in the guideline development process. Hopefully, this will continue through the development of this new guideline.
Further consultation on the scope
There will be a further period of consultation to cover an updated version of the scope starting in June (when NICE will have taken note of the discussions at the stakeholders meeting) and the ME Association will be sending in a more detailed written submission.
To do so we will be taking including comments from our members. We will shortly be announcing how this membership consultation will take place.
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Lucy Bannerman, The Times, 26 May, 2018.
ME left Merryn Crofts bed-bound and she died shortly after her 21st birthday.
It took a death certificate for Merryn Crofts to be vindicated.
For the last six years of her life she had fought to convince people that ME, the illness that had left her bed-bound, was real.
She was 15 when she started feeling weak and breathless and her feet began to swell.
Within six months she was using a wheelchair. Within a year she was housebound. She died in May last year, ten days after her 21st birthday.
Last week, Ms Crofts became only the second person in the UK to have her death recorded as a result of ME after a coroner concluded that it was the much misunderstood illness that was likely to have led to the gastrointestinal failure and other complications that caused her to starve to death.
“It meant the world to me,” her mother, Clare Norton, 49, told The Times. “I know it sounds strange but that kind of official recognition is vindication for Merryn that this was physical. I can’t thank that coroner and all those doctors who gave evidence enough.”
Myalgic encephalomyelitis (ME) affects about a quarter of a million Britons.
The main symptom is extreme fatigue, or “bone-crushing exhaustion” as Mrs Norton puts it.
Other symptoms include muscle pain, hypersensitivity to noise and light, and problems with sleep, memory and concentration.
Tests would later show that at some point she had suffered glandular fever.
She loved musical theatre and wanted to go to drama school, but would come home from school and crash out.
“Her limbs became like lead, as if she was paralysed. Her breathlessness was more like a constant air hunger.”
Mrs Norton remembers going with her daughter to buy new shoes — her swollen feet meant she went up two sizes.
“She was walking like an old lady. Everything became slower and slower. We managed to carry her back to the car and she fell asleep. It was like watching a toy run out of batteries.
Ms Crofts was full of life before developing the disease, her mother said.
“But she didn’t want to give in. She’d say, I can push through it, I can push through it, it’s just mind over matter.” They now believe that the exertion was making her worse.
In the early days of the illness, Ms Crofts’ complaints were dismissed by various doctors as panic attacks and, on one occasion, “hysteria”, according to her mother.
“This seems to happen particularly with teenage girls,” she said. “I know men in their 30s with ME and they don’t seem to get the same response.
“We had doctors saying we just don’t believe in ME. When everyone is saying that to you it’s like a nightmare you can’t get out of.”
Ms Crofts was concerned that her family did not believe her either. “Sometimes she’d say, you don’t think that, do you? She was concerned we thought the same. I said, no darling, we’re going to get to the bottom of this. We’re going to find out what’s wrong. ”
Within two years, she was struggling to swallow. Eventually, she had to be fed through a tube. She was five and a half stone when she died. At the inquest, experts ruled out eating disorders, depression and anxiety.
She had loved fashion — “shopping was her sport” — but once bed-bound couldn’t even bear the touch of certain fabrics on her skin. She found relief in online shopping, buying clothes she couldn’t wear to give to her friends.
“She enjoyed watching me unwrap them for her and choosing who she would give it to,” said Mrs Norton, who gave up her job as a counsellor to care for her daughter full-time.
Towards the end, Ms Crofts couldn’t bear light or even her mother’s touch. “She was such a huggy girl. A Merryn hug was lovely but she couldn’t be hugged. Sometimes, I could stroke her cheek. I developed a way of lying around her, so we could be close.
“She wanted to hug, but she couldn’t. She wanted to eat but she couldn’t. It just stole everything away from her.”
Mrs Norton marked the first anniversary of her daughter’s death this week by becoming a grandmother: her eldest daughter, Amy, gave birth to a son, Flynn. She hopes that Merryn’s case “will bring a sea change in the way people think about ME”.
In 2006 Sophia Mirza, 32, from Brighton, became the first person in the UK to have her death attributed to ME.
Ms Crofts’ brain and spinal cord have been donated for medical research at Addenbrooke’s Hospital, Cambridge. “People with ME have been so badly treated. She wanted to donate her organs so that people didn’t need to suffer like she did,” Mrs Norton said.
A misunderstood illnessMyalgic encephalomyelitis, which affects about a quarter of a million Britons, is recognised by the World Health Organisation as a neurological illness but there is disagreement between health professionals over whether it needs psychological interventions or is mainly physical.
The health watchdog NICE is updating its guidelines for treatment in England amid concern that one of the commonly recommended therapies, involving more exercise, may do more harm than good.
According to the ME Association, one in four sufferers is affected so badly that they are housebound, and in some cases unable to shower or feed themselves.
An ME Association spokesman said: “The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Reflective comments
Dr Charles Shepherd.
ME Association reporting of the very sad circumstances surrounding the death of Merryn Crofts, along with the update from the Coroner’s Inquest that was held on Friday 18th May, has raised a number of important issues and concerns, particularly on our social media.
On a personal basis, I have been in contact with Merryn’s family over a considerable period of time. I have also been involved in making sure that Merryn’s very courageous decision to donate body tissue after her death to aid medical research into the cause of M.E. was carried out.
Everyone at the ME Association who has been involved with this very sad story has tried their best to make sure that our reporting, and the resulting press coverage, has been accurate, sensitive and reflects the views of Merryn’s family.
Role of M.E. in cause of death often considered unimportant
Getting things absolutely right in situations like this is never going to be easy and the subsequent press reporting has not suited everyone. However, I am sure that all would agree that it is a very sad and important event that reflects just how serious and devastating this illness can be.
And, given the fact that consideration of the role of M.E. at the time of death is often considered unimportant by pathologists and coroners, we just do not have accurate information as to how often M.E. plays a role in reducing life expectancy or is an actual cause of death.
Unless these issues are properly addressed by both the medical profession and coroners, we will never have accurate information relating to:
It is also important to note that in our current state of knowledge, fatalities in people with M.E. are small in number. Even in those with severe M.E. where death might be the result of medical factors that are associated with, for example, prolonged immobility, or treatments (like powerful painkillers), or interventions (like tube feeding) that form part of management.
It should also be noted that the outlook for children and young people with M.E. is far better than for adults. Many children and adolescents do make significant improvements in health over the course of time. Some even return to full normal health.
“The recording of deaths in people with M.E. is unsatisfactory…”
Merryn Crofts before M.E.
However, the recording of deaths in people with M.E. is unsatisfactory.
The current situation clearly highlights the need for more research involving people at the severe end of the spectrum, especially with the sort of gastrointestinal and nutritional problems that can occur.
It also reinforces the need for proper and thorough investigation at the time of death.
But there are also theoretical reasons – for example, the link with low blood pressure in M.E. – which could play a role in increasing life expectancy, especially for those who are not in the severe category.
M.E. is also likely to involve a range of sub-groups linked to both clinical presentations and underlying disease processes that are present in individual cases.
So, life expectancy in M.E. is a complex and uncertain issue where lack of information makes it difficult to draw any firm conclusions.
Media reporting
John Siddle, who deals with the press and media at the ME Association, attended Merryn’s inquest. He then produced a detailed and sensitive report on the findings which was circulated to the press (below).
We believe it was important to notify the press about Merryn’s early and tragic death – which has also formed the basis for the BBC Newsbeat documentary – as well as the findings from the inquest.
The inquest received detailed coverage in several national newspapers, including the Daily Mail and the Sun, and most recently, the Times (see below). The articles were sympathetic and accurate – apart from some of the background facts about M.E., which were not supplied by the ME Association.
Merryn was just 21 years old when she died from M.E.
Pathology of M.E.
The comments and statements from the various health professionals who were involved with Merryn, and who attended her inquest, also contain some interesting and important observations.
In particular, the information from the pathologist regarding inflammation in the ganglia (part of the nervous system) – as this may link with the other finding of dorsal root ganglionitis that has been reported in previous post mortems on people with M.E. (see the research paper abstract below).
Without having more information from the inquest, it is difficult to comment further at this stage about the precise role of M.E. in the causation of Merryn’s death.
And, as her post mortem tissue is still being examined at Addenbrooke’s Hospital in Cambridge, (where M.E. post mortem research is being carried out and funded by the ME Association Ramsay Research Fund) it would not be right to do so until this information becomes available.
Some preliminary findings from previous post-mortems that have been carried out on people with M.E. were reported by the post mortem research group in The Journal of Neurological Sciences. A summary of these findings can be read below (and in the research section of our website).
I have also spoken to the BBC in relation to the Newsbeat documentary. The programme obtained some official information on cases where M.E. has been mentioned on a death certificate. I will arrange for this information to be published in due course.
Finally, our thoughts remain with Merryn’s family at what is another very difficult time for them.
Thank you.
More information
Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
International Science Symposium 3-4 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Queensland, Australia: Population Health and Neuroimmunology Unit, Bond University.
December 2010
DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
1Addenbrooke’s Hospital Cambridge UK, 2Queen’s Hospital Romford Essex UK, 3Royal Devon & Exeter Hospitals UK, 4Honorary Medical Advisor to The ME Association UK
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood. We report the post mortem pathology of four cases of CFS diagnosed by specialists.
The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning. Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship. The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.
One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.
This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity e.g. hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.
Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.
The differential diagnosis of ganglionitis should be investigated in CFS/ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.
Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.
A specific CFS/ME brain and tissue bank in the UK is proposed.
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Helen Hyland, Fundraising Manager, ME Association.
While the rest of us will be taking a well-earned break this Bank Holiday weekend, three very special people are going to be fundraising hard for M.E., and for people they care deeply about.
Abi is running the Lee Valley Velo Park Half Marathon.
Abi writes, “I am running for my cousin Jho who had to give up his hugely successful, global career and music management business because of M.E.
“It is so sad because he had succeeded in bringing some of the best, revolutionary music to our playlists, radios and music festivals, so much so that he inspired the path I’ve chosen to take in life!
“On a bad day, he may now struggle to do the littlest things, such as standing up to watch his son play football from the bedroom window or play fairy dress up with his little girl. All things we take for granted.”
Megan is clambering up tough hills in Yorkshire because M.E. forced her husband Tim to give up work 6 years ago.
Megan is running the Three Peaks challenge in Yorkshire.
She’s not a natural mountain goat, and has had to fit in her training around ensuring their household runs smoothly as she is mother of our two children, Tim’s carer and goes out to work.
But Megan is determined to do all she can because, she fervently believes that there is far too little research into M.E. and far too many medics still think it is psychological.
David is now a veteran fundraiser for M.E. Last year he ran over 1000 miles to fundraise for the ME Association.
For this final race he’ll be dressed in a fetching purple tutu. Running is vital therapy for him because he is his wife Sandra’s carer.
He is particularly worried about this last run because he’s having to stay away for a night and this is leaving him anxious. He’s cooked hard to make sure that his wife has adequate supplies of food and drink with minimal effort to prepare (she can’t stand for long periods).
David’s fourth and final marathon is in Dorchester.
But there’s always the worry that she might experience a “crash” when her energy completely goes. This can happen after a very slight exertion such as getting up to answer the phone. It’s all a bit unpredictable. She copes with all this but it’s far from easy.
He’s not asking you to get the violins out here as he says he thinks they are actually “pretty lucky” because many sufferers are completely bedbound, and Sandra does get occasional “better days”.
David finds it hard to say that he is his wife’s carer. He thinks that he probably isn’t a very good one and hates feeling that although he is doing his best, he may sometimes fall short of the required standards.
Fundraising manager, Helen Hyland, insists however that NONE of these particular fundraisers should feel that they are letting anyone down this weekend – they are all heroes in her eyes.
Between them they have raised well over £3,000 – beating their combined targets by nearly 100%. And yet they are still keen to do more.
She says “If you know David, Abi or Megan and haven’t yet donated, then please do so now. Help to make the UK a better place for the people with M.E. that they care so much about.”
The ME Association
We help people with M.E. and their families.
If you would like show your support for our vital work then please donate whatever you can afford to our ME Awareness Week Just Giving campaign – Go BLUE for ME.
If you want your donation to go towards research, then please leave a note in the comments and we will ensure it reaches the Ramsay Research Fund.
Help us continue to make the UK a better place for people with M.E.
Stay strong fellow spiritual seekers - you are all awesome!!!
Following a very successful ME Awareness Week, Sky One have been in touch and want to champion M.E. as a campaign for their series ‘What’s Up TV’.
This is another terrific opportunity for you to tell the wider world just how M.E. affects your life and to raise any issues you feel are important.
Robyn Beaumont, a researcher for the programme, explains what is required below.
She has also sent two of their previous campaigns so that you can judge for yourself how well they have approached other medical topics.
Robyn explains:
“I am a researcher on a Sky One programme called What’s Up TV. We are an arts and culture magazine show with a reach of 100,000 households, and we have a young demographic of 16-25.
“Every series we pick a campaign – this is generally a cause we feel deserves more attention – and this series our campaign is M.E.
“As part of this campaign I am producing an item on M.E. This item will give an introduction about the disease to our viewers – how it affects patients, and the challenges the community currently faces.
“As part of this it would be fantastic to feature the voices of people who live with the condition – this would entail people sending in short videos (no more than 20 seconds) of individuals speaking about the condition and their life to camera.
“This could be how having M.E. has changed their life, the medical treatment and support available to them or the level of awareness they believe M.E. currently has. The videos will be cut together and used as part of the item.
“The videos should be as high quality as possible, but a phone recording would be fine.
“They can be sent to my email address preferably in MP4 form and titled ‘My M.E. Video’.
“I would really appreciate your help in telling the story of the M.E. community.
“Below I have linked a couple of our previous campaigns, so you can get an idea of what we are working towards.
“Thank you.”
Robyn Macrory-Beaumont
Researcher
Email: Robyn@whatsuptv.co.uk
Please be sure to send your 20-second video-clips to Robyn Macrory-Beaumont and not to the ME Association on this occasion. Thank you.
Registration is now open for the 2018 UK CFS/M.E. Research Collaborative conference, which takes place at the Future Inn in Bristol on Wednesday 19 and Thursday 20 September.
CMRC Research Conference in Bristol on 19th and 20th of September at the Future Inn.
The conference aims to increase collaboration between researchers in the M.E. field and with those from other research/illness areas.
It is a fantastic opportunity for researchers and patients to network and learn more about the latest published and unpublished research, meet potential collaborators and contribute to future developments.
Registration fees for people with M.E. and their carers start from £50 for a single day’s conference pass to £250 per person (or £405 per shared room) for a two-day conference pass including drinks reception, delegates dinner and overnight accommodation.
This year the event will be open to everyone for both days (previously the second day of the event was only open to researchers) and the evening dinner on day one is also available to patients and their carers.
As the CMRC does not receive enough income to cover the costs of the conference, it is asking for this contribution, which is heavily subsidised to enable access to the conference for people affected by M.E.
Book your place now via the CMRC Eventbee page
The programme is still being finalised, but confirmed speakers include:
Research abstracts
If you are a researcher and would like to submit an abstract for presentation at the conference, the deadline for submissions is Friday, 29 June, 2018. Submitted abstracts will be subject to peer review before acceptance. For more details see the CMRC Eventbee page.
Filming
With speakers’ permission, we aim to film each presentation to broadcast live and/or upload as a recording following the conference. Please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Details of livestreaming and/or filming will be made available nearer the time; keep an eye on our social media for announcements.
More information
The ME Association are members of the CMRC Executive along with Action for M.E. who also provide secretariat support. Details about the conference will be made available on our social media or you can find information on the CMRC Eventbee booking page.
May 2018
Interview with Prof Chris Ponting, the new Deputy Chair of the CMRC
Prof Chris Ponting is also Chair of Medical Bioinformatics at University of Edinburgh, and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine.
What inspired you to join the CMRC?
In a word: Simon. I’ve known [blogger and M.E. advocate] Simon McGrath more than a decade longer than the 20 years or so of his M.E. I have seen him on his better days and have been unable to speak with him on his worst. I have seen M.E. steal some of life’s ordinary hope and future. Simon has so much more to give in life than M.E. allows.
Prof. Chris Ponting, Deputy Chair, CMRC.
I started off my career as a physicist but then chose, instead, to try to use biomedical research to make a difference to people. It was a constant frustration that I couldn’t help Simon, and other people with M.E. Now is my chance.
All that I have seen or heard tells me that change is desperately needed and needed fast. Time will soon tell whether the Collaborative can help catalyse change.
A window of opportunity is currently open, and we have to take advantage of it before it slams shut, before the attention of decision-makers and grant-funders naturally turns to other areas.
This opportunity has been gained by the exceptional work of many people, but in my view most specifically [Unrest director] Jennifer Brea, in challenging how society perceives M.E.
Much work behind the scenes is pushing for change, or more precisely for the funds needed to deliver the robust, well-powered biomolecular research that might overturn prejudice and generate new hypotheses.
What is your view on the PACE trial and behavioural treatments for M.E. and/or CFS?
There have been several questions that I thought worth asking of the PACE trial team. So, early in May 2017 I sent through questions focused on the revised recovery criteria, and on the unblinded nature of the trial and its subjective outcome measures. Of course, I am disappointed not to have received any response.
The reanalysis of PACE data by Wilshire et al. shows that effects of CBT and GET are more modest than previously claimed. I agree with them that even these modest effects could be an unintended consequence of the unblinded trial design
What challenges are the CMRC facing right now?
To help to win a step change in M.E. funding; to gather a team of scientists who work with people with M.E. across disciplines to produce world-class science; and to create the “intellectually generous community sharing data, best practice and technologies” (alongside the Collaborative’s other recently announced values).
Our research should be curious, inclusive, questioning and open-minded, and we need to celebrate well-reasoned and evidence-based views. We need to listen. When we don’t know, we say so.
Prof Stephen Holgate is the right person to lead this: he founded the CMRC; he is he go-to person for funders; he is inclusive and generous; he is an internationally renowned clinician scientist.
Yes, we do not agree on everything, which is to be expected among researchers: “Disagreement is something normal,” the Dalai Lama said. It is not Prof Holgate’s fault that UK funders have not (yet!) funded M.E. research adequately.
Have you ever been so angry that your face turns red, your body starts shaking, or you feel like you just want to hit something?
You can imagine anger like a volcano, building up pressure until the top just blows off. Or, if you’re like me, maybe you remember Bugs Bunny cartoons and watching the characters blow steam out of their ears. Lol!
When we experience the emotions of anger, there’s actually a whole series of biological effects that take place in the body. Here’s a really cool 2 1/2-minute video on the science of anger.
Anger is a natural emotion and it should be acknowledged. It can also be a catalyst for positive changes, like when we see an injustice that should be righted, when we witness another being hurt, or maybe if we’ve been taken advantage of.
But when we hold on to this emotion, or if we are quick to anger all of the time (like someone cutting you off in traffic) it can actually be toxic and degrading to our overall health.
That’s why we need the proper tools to release it, and to bring our bodies back into balance.
If you’d like some help with releasing anger, I encourage you to check out this Tapping Meditation. It’s great to use in the moment, and when used repeatedly, it can train your brain and your body to be less prone to anger.
Until next time,
Keep Tapping!
Nick Ortner
The post How Anger and Other Negative Emotions Affect Your Body appeared first on The Tapping Solution.
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Hi Everyone
I am sorry for not posting much recently, I have just been super busy with the audio book and updating the main site and this blog, mainly giving both a makeover and also making them both mobile and tablet ready. Every thing changes at a fast rate and so you have to constantly keep up.
I am also in the middle of creating a youtube channel and will let people know when this is complete. I will just keep adding helpful videos as and when I get the time. I will also be adding a lot more new content to the main site in the next few months and hopefully posting here more regular.
Well on to todays post. I am actually not going to copy and paste today, as the information has been created through me completely rewriting a page on my site, so I will just post a link to it. The subject is obsessive/worrying thinking and how to overcome it. This seems a real stumbling block for people, so hopefully the information can help people move forward with this. Just click on on the link below to access.
How to be free of negative thoughts and obsessive, overthinking.
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22 May, 2018.
The Education Committee at the House of Commons is holding an inquiry into the Government’s policy on special educational needs.
This provides an opportunity for parents of children with M.E. to submit evidence relating to how they have managed to find suitable education provision.
For example, we have been hearing from several parents who have found it very difficult obtaining suitable provision for children who are 16-18 years of age, and other parents who have had problems getting suitable home tuition put in place.
While individual concerns will not be addressed by the committee’s inquiry, there are several points in the terms of reference (below) that may apply in the case of a child with M.E.
For example, assessment and support, roles of and cooperation between education, health and social care, and provision for 19-25 year old’s.
You can make a written submission on your own behalf, as an individual parent, or you might want to make a joint submission with other parents as part of a group.
The deadline for submission is Thursday, 14th June, so there is only three weeks remaining to contribute to this inquiry.
“In 2014, the Government introduced wide-reaching changes to the SEND system, with the intention of offering simpler, improved and consistent help for children and young people with SEND. The Government claimed these changes would give families greater choice in decisions.
“The Committee’s new inquiry is intended to review the success of these reforms, how they have been implemented, and what impact they are having in meeting the challenges faced by children and young people with special educational needs and disabilities.
Terms of Reference – Call for written evidence
The Committee is inviting written evidence on the following by 14 June 2018:
More information
22 May, 2018.
Carol Monaghan, MP, tabled several questions about M.E. recently in parliament. This one about biomedical research resulted in a rather full response from the minister of state for health and social care.
Biomedical research funding
Carol Monaghan MP (Glasgow North West).
“To ask the Secretary of State for Health and Social Care, how much funding from the public purse he plans to allocate to biomedical research into Myalgic Encephalomyelitis in the current financial year.”
Answered by Caroline Dinenage MP Minister of State (Department of Health and Social Care):
“In the period in question, the major National Institute for Health Research (NIHR) funding for biomedical research was through its Biomedical Research Centres and Units.
“These support research funded by the NIHR itself and also research funded by other public, charity and industry research funders.
“The level of funding for biomedical research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for each financial year can be found in the table below. The funding for this research came from a combination of funders.
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
“The NIHR Clinical Research Network (CRN) provides the infrastructure that allows high-quality clinical research funded by charities, research funders and life-sciences industry to be undertaken throughout the National Health Service.
“The level of funding for biomedical research into CFS/ME for each financial year can be found in the table below. The funding for this research came from a combination of the NIHR, the Medical Research Council (MRC) and medical research charities.
“Expenditure from the CRN coordinating centre itself is also outlined below:
| Financial Year | CRN funding for research, £ | Coordinating expenditure, £ |
| 2014-15 | 134,769 | 17,485 |
| 2015-16 | 125,176 | 17,796 |
| 2016-17 | 82,866 | 7,821 |
Continuing priority
“The MRC spend on research directly relating to CFS/ME can be found in the following table. Research into CFS/ME is a continuing priority for the MRC.
| Financial Year | £ |
| 2014-15 | 652,044 |
| 2015-16 | 287,234 |
| 2016-17 | 286,197 |
Caroline Dinenage MP Minister of State (Department of Health and Social Care).
“The NIHR and the MRC welcomes funding applications for research into any aspect of human health, including biomedical research into CFS/ME.
“It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
“On this basis, it is not possible to say how much funding is planned in the current financial year.
“The NIHR recognises that CFS/ME is a debilitating condition and is speaking with the United Kingdom CFS/ME Research Collaborative (CMRC) and patient representatives about how best we can support a joined up approach to high quality research into this complex disorder.”
Take Action
Please ask your MP (or MSP) to support the following parliamentary motions about M.E.
Click the relevant link below and you’ll find more information and a template email/letter you can send:
The more support we can gain for these motions, then greater the chance the same MPs will support the call for a full debate which is currently being prepared by Carol Monaghan.
You can hear Ms. Monaghan explain the purpose of these motions in the latest episode of The ME Show – now available on our website and iTunes!
