Thursday, 31 May 2018

Sodalite Aids Deeper Spiritual Understanding of Truth and Idealism


Sodalite aids communication of profound philosophical ideas. The metaphysical properties of this blue stone may stimulate clairvoyance, intuition and your latent creative and mental abilities.

from Healing Crystals For You


#crystals #crystal #healing

Significance of ‘Anjali Mudra’ in Yoga

The Anjali Mudra is a common hand posture used during the practice of yoga. It is often applied as the starting posture that leads to other postures. In Sanskrit, the...

from Ayurveda India – Ayurvedic Remedies | Holistic Health


#ayurveda #ayurvedic

May 31, What Causes Cancer

The simple answer to the what causes cancer question is a variety of factors. When something that is not good for us affects our cells and their environment, DNA can...

from Holistic Healing Blog


#holistic #healing

Wednesday, 30 May 2018

NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018


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.


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:

  • Explains why the guideline is needed
  • Identifies which topic areas will be included or excluded
  • Ensures the guideline addresses key areas of variation in delivery of care and quality

The main purpose of the workshop was to:

  • Obtain stakeholder views on the draft scope in relation to prioritisation of correct areas for inclusion and whether there are any omissions
  • Identify membership for the guideline committee
  • Encourage applications for the guideline committee

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:

  • Encouraging relevant organisations to become stakeholders
  • Facilitating recruitment of patients, carers and advocates to NICE guideline development committees as lay members
  • Providing on-going support and training

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:

  • Scope consultation: 21st June to 19th July
  • Application for committee members: 21st June to 19th July
  • First guideline committee meetings: from the end of November 2018
  • Guideline development process: about 70 weeks
  • Guideline consultation: April 2020

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.

  • Chair Dr Peter Barry: Paediatric Intensivist, researcher and honorary senior lecturer in child health at University of Leicester (biography is from 2000).
  • Vice Chair Baroness Ilona Finlay: Consultant Palliative Medicine, President Chartered Society of Physiotherapy, Chair Palliative Care Strategy Implementation Board for Wales, Chair Welsh Medical and Dental Academic Advisory Board.

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:

  • GPs X2
  • Physicians with an interest in ME/CFS (e.g. neurologist, infectious diseases, immunologist) X3
  • Psychologist
  • Occupational therapist
  • Physiotherapist
  • Dietitian
  • Paediatricians X2
  • Nurse with special interest in ME/CFS
  • Social worker
  • 4 lay members to include a patient and/or carer

In relation to lay members, the following options are being considered:

  • Consideration will be given to forming a sub-committee of people with more severe ME/CFS who could take part in virtual meetings. These would be short meetings with flexibility regarding timing and organisation
  • Separate formal focus groups for those with more severe illness and children/young people with ME/CFS
  • Use of the Delphi process to engage with wider patient groups

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:

  • Adults with suspected or diagnosed ME/CFS
  • Children and young people
  • People with severe symptomatology
  • Monitoring and review
  • Information, education and support for people with suspected or diagnosed ME/CFS, their families and carers

The guideline will also cover:

  • Ways in which outcomes are measured (e.g. use of quality of life, pain and fatigue scales)
  • Health economics – NICE guidance only recommends interventions or practices that are considered cost effective

Key areas that would not be covered:

  • Management of other conditions occurring alongside ME/CFS
  • Management of symptoms (e.g. headaches) where NICE guidance already exists

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?

  • NICE should include occupational health service providers as a group for which the guideline is for rather than may also be relevant for – as stated in the current scope.

Collection of evidence

  • There is a strong need to collect and consider evidence on treatments that appear to work, and ones that do not work, from both patients and clinicians. This is in addition to published evidence from clinical trials. Patient and clinician evidence was included and given equal weight in the CMO Working Group Report on ME/CFS – partly in view of published evidence from clinical trials being either unavailable or of poor quality in many instances. From previous meetings with NICE, and the feedback at the meeting, it appears that NICE are accepting the need to include clinician and patient evidence.

Nomenclature and definition of ME, CFS and ME/CFS

  • The problems and uncertainty created by having over 20 different clinical and research-based definitions for ME, CFS and ME/CFS.
  • The unsuitability of the name chronic fatigue syndrome (CFS)

Clinical assessment and diagnosis

  • The need for clinicians to have accurate basic information on relevant points in history taking, examination and relevant investigations in relation to the clinical assessment stage of people with a possible diagnosis of ME/CFS to make an early and accurate diagnosis, especially in primary care (general practice). It was felt that GPs should have the necessary skills to be able to make an early and accurate diagnosis in most cases where the onset is uncomplicated. But this will require medical education.
  • Consideration needs to be given as to how people with a diagnosis of a post-viral fatigue syndrome (which may be the most appropriate term to use in the early stages of a post infectious ME/CFS-like illness) are to be covered in this guideline.


  • The guideline needs to include information on the presence of other conditions that may co-exist with ME/CFS – fibromyalgia, irritable bowel symptomatology, migraine type headaches, osteoporosis in severe ME/CFS etc. – and how they should be managed in relation to ME/CFS.


  • Flaws in the way that clinical trials (especially the PACE trial) have been conducted in relation to CBT and GET. Noting that patient evidence has consistently indicated that CBT is not an effective form of treatment for ME/CFS (although it can sometimes help some people to cope) and that GET makes many people worse. The current recommendations re: CBT and GET cannot therefore remain. Despite requests by the ME Association to NICE for GET to be removed from the current guideline; there is no indication at present that this will happen – so the current recommendation that GET should be offered to everyone with mild or moderate ME/CFS will remain in force until publication of a new guideline in October 2020. I discussed this with a senior member of the NICE team after the meeting and again asked for some form of health warning to be issued by NICE in relation to GET – if they are not prepared to remove GET from current guidance.
  • Although research into the cause of a condition falls outside the remit of a NICE guideline, the committee do need to take note of the research involving exercise physiology – from researchers such as Mark VanNess et al (i.e. people with ME/CFS have a serious problem with aerobic energy metabolism and an early transition to anaerobic metabolism – they are not deconditioned) – and muscle dysfunction when they come to consider the recommendations on activity management.
  • There must be more information on the management of specific symptoms – orthostatic intolerance and PoTS, pain, sleep disturbance etc. – even where a NICE guideline on a specific symptom currently exists. Simply referring to the fact that there is a NICE guideline on neuropathic pain will not cover the overall and complex problem of pain management in ME/CFS.
  • The guideline must recognise the heterogeneity of the population covered by ME/CFS in relation to both clinical presentations and disease pathways. So, management must be personalised and not based on the current ‘one size fits all’ approach.
  • Problems relating to the intention to review evidence for use of the Lightning Process in ME/CFS – e.g. criticisms of the SMILE trial and Advertising Standards Authority adjudications in relation to some Lightning Process adverts.
  • The need to include objective measures of outcome – e.g. use of actometers to measure activity levels, DWP benefit status, school attendance, return to employment – when assessing the results from clinical trials. Total reliance on subjective outcome measures is not satisfactory.
  • Acknowledgement that some of the drug treatments that are often prescribed for key symptoms such as pain and sleep disturbance are not licensed for this purpose. The wording in the current scope regarding the use of unlicensed drugs is therefore too restrictive.
  • A less dogmatic and prohibitory approach to the use of treatments such as antiviral drugs – where there is some published evidence of benefit in carefully selected sub-groups of people with ME/CFS (e.g. clinical trials from Montoya et al. involving valganciclovir).


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:

  • Disability aids and adaptions, including Blue Badge applications
  • Education
  • Employment
  • Pregnancy
  • Vaccinations

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.


from ME Association



Photo | Spiritual

from Spiritual Seeker 77



Tuesday, 29 May 2018

Prasiolite Makes A Spiritual Connection To The Earth


Prasiolite or Green Amethyst clears disharmonious energy, activates your inner vision and enhances your heart based spiritual connection to Mother Gaia.

from Healing Crystals For You


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The Times: ME sufferer who was dismissed as hysterical vindicated in death | 29 May 2018


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.

Before Ms Crofts became ill, Mrs Norton said that her daughter “never stopped. She didn’t have lie-ins. She had things to do and friends to see. She was very, very healthy.”

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.”


from ME Association



Photo | Spiritual

from Spiritual Seeker 77



Monday, 28 May 2018

May 28, Essential Energy Healing Techniques

Learn these free easy essential energy healing techniques for self healing and healing others...

from Holistic Healing Blog


#holistic #healing

Photo | Spiritual

from Spiritual Seeker 77



The ME Association and Press Coverage of Merryn Crofts Inquest by Dr Charles Shepherd | 28 May 2018


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:

  1. how often M.E. is a primary cause of death and what pathological findings are relevant in such cases,
  2. how often M.E. is contributory factor to a death in someone with a primary diagnosis of M.E.,
  3. what effect M.E. has on overall life expectancy in relation to different sub-groups involving both symptom profile and illness severity.

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.

  • Daily Mirror: ‘Young woman bed-bound for three years before dying of disease that some insist is all in the mind’
  • Daily Mail: ‘Drama student, 21, was killed by ME rules coroner even though some say condition is all in the mind’
  • The Sun: ‘Young Star’s Tragedy: Wannabe actress Merryn Crofts has become only the second person in Britain to die from ME’
  • The Times: ‘ME sufferer who was dismissed as hysterical vindicated in death.’ [Paywall]

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.


from ME Association



Sunday, 27 May 2018

May 27, How to Make a Healthy Herbal Infusion

Strong herbal infusions are tasty, nutrition-packed beverages you can enjoy hot or cold. In this article, you will learn how to make an herbal infusion to boost your health and protect yourself from the negative effects of stress.

from Holistic Healing Blog


#holistic #healing

Goethite Heals Grief And Raw Emotions, Strong Grounding Energy


Goethite boosts clairaudience and enhances creativity and emotional healing. It helps to heal grief after loss of a loved one and is easy to program with your intentions. Creates an earth connection with strong grounding energy.

from Healing Crystals For You


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Pietersite or Tempest Stone Creates Deep Spiritual Awareness

Blue Pietersite

Pietersite connects you to your internal guidance system, aids will power and assists life changes. Use in meditation to aid altered awareness, develop psychic visions, telepathic ability and intuition.

from Healing Crystals For You


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May 27, Mind Body Medicine Pioneers

What do John Sarno, Herbert Benson, Bruce Lipton, Candice Pert, and Rye Hamer have in common? They are all pioneers in the field of mind body medicine that have challenged the status quo to....

from Holistic Healing Blog


#holistic #healing

Photo | Spiritual

from Spiritual Seeker 77



Saturday, 26 May 2018

Developing Intuition, Instinct And Perceptive Insight

Green Prehnite Pendant

Developing intuition and instinct aids immediate and intuitive recognition via your psychic senses. Discover which crystals boost this gift to gain inner wisdom & develop deeper spiritual connections thru the subconscious mind.

from Healing Crystals For You


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Aquamarine Stones For Courage And Clear Communication


Aquamarine stones heighten courage when handling grief, and assist self healing. These crystals are a March birthstone and a zodiac birthstone for a few starsigns. They have a lovely energy that helps you to release anger and reduce stress.

from Healing Crystals For You


#crystals #crystal #healing

ME Association Fundraising: Running for M.E. and for people we care about | 26 May 2018


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.

  • Abigail will be racing in the Lee Valley Velo Park Half Marathon,
  • Megan is aiming to scale not one, but THREE, peaks for M.E. in Yorkshire, and,
  • David is running his last of FOUR marathons for M.E. in the space of just 30 days, in Dorchester.

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.


from ME Association



Friday, 25 May 2018

spiritualseeker77: Stay strong fellow spiritual seekers - you... | Spiritual


Stay strong fellow spiritual seekers - you are all awesome!!!

from Spiritual Seeker 77



Photo | Spiritual

from Spiritual Seeker 77



Can you help? We need short video clips for a Sky One series ‘What’s up TV’ that will campaign for M.E. | 25 May 2018


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

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.


from ME Association



2018 CMRC Research Conference: Register Now for ME/CFS Bristol Conference | 25 May 2018


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:

  • Dr Derya Unutmaz, National Institutes of Health, USA
  • Prof Alain Moreau, University of Montreal, Canada
  • Mark Jones, UCB Pharma
  • Dr Luis Nacul, London School of Hygiene and Tropical Medicine
  • Dr Eliana Lacerda, London School of Hygiene and Tropical Medicine; Chair, EUROMENE
  • Dr Elisa Oltra, Universidad Católica de Valencia
  • Cara Tomas, Newcastle University
  • Prof Eleanor Riley, University of Edinburgh
  • Prof Frances Williams, Kings College London

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.


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.


from ME Association



Photo | Spiritual

from Spiritual Seeker 77



Thursday, 24 May 2018

How Anger and Other Negative Emotions Affect Your Body

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

Have you ever used Tapping to calm your anger? I’d love to hear about. Comment below!

The post How Anger and Other Negative Emotions Affect Your Body appeared first on The Tapping Solution.

from The Tapping Solution


#EFT #holistic #healing

Photo | Spiritual

from Spiritual Seeker 77



spiritualseeker77:LMAO!! 😁 | Spiritual


LMAO!! 😁

from Spiritual Seeker 77



How to be free of over thinking

How to overcome obsessive thinking

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.

from Anxiety No More Blog


#anxiety #stress

Karlite Diamond Quartz

For the last few years my friend Shawn has been finding this Devic quartz in his land in Ghent, NY. It was not until recently we were told first that it

from Healing Crystals For You


#crystals #crystal #healing

Wednesday, 23 May 2018

Sunstone Helps SAD Disorder & Awakens Cosmic Consciousness


Sunstone helps the depression related to the SAD disorder. Aids stress with its warmth and strength. Has properties that bring mental clarity and strong leadership abilities. Assists lightbody development.

from Healing Crystals For You


#crystals #crystal #healing

Ayurvedic herbs, oils and diet for postpartum care

A new mother feels exhausted and tired after childbirth. According to Ayurvedic medicine, the choices made during the initial 42 days following childbirth plays a vital role in maintaining the...

from Ayurveda India – Ayurvedic Remedies | Holistic Health


#ayurveda #ayurvedic

Government Inquiry into support for children and young people with special educational needs and disabilities (SEND) | 23 May 2018


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.

The 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:

  • Assessment of and support for children and young people with SEND
  • The transition from statements of special educational needs and Learning Disability Assessments to Education, Health and Care Plans
  • The level and distribution of funding for SEND provision
  • The roles of and co-operation between education, health and social care sectors
  • Provision for 19-25-year old’s including support for independent living; transition to adult services; and access to education, apprenticeships and work

More information

  1. To make a submission,
  2. Terms of Reference,
  3. Guidance on written submissions.


from ME Association



Carol Monaghan, MP, Parliamentary Questions on ME/CFS and Biomedical Research Funding | 23 May 2018


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.

Written Question 145357

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:

  1. Early Day Motion 1247 from Carol Monaghan, MP, which has now attracted 88 signatures in Westminster.
  2. Scottish Motion S5M-12207 from Gail Ross, MP, which has now attracted 46 signatures in Edinburgh.

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!


from ME Association