Sugilite is the Premier Love Stone. It embodies the violet ray and aids violet flame healing. Helps you to gain wisdom, deep spiritual love, psychic protection and grounding. Also a January birthstone.
No you’re not crazy - the world needs fresh perspectives!!! :)
Yep :)
Learn about using a pendulum and discover how you can get answers from spirit. Why would you use a pendulum? Get guidance from your higher self about important life situations.
Ruby stone aids manifestation and helps you to overcome sexual dysfunction and attract new love. It encourages leadership and increased concentration, with sharpness of intellect.
Ruby stone aids manifestation and helps you to overcome sexual dysfunction and attract new love. It encourages leadership and increased concentration, with sharpness of intellect.
In this latest open-access study funded by the ME Association Ramsay Research Fund, Dr Keith Geraghty and Charlotte Blease examine the controversial biopsychosocial (BPS) model that is still applied in ME/CFS.
They identify several ways the BPS approach can lead to patient distress and harm and compare it with the preferred biomedical model – highlighting implications, and making suggestions, for the clinician-patient relationship.
| “BPS model rhetoric may be partly responsible for influencing the way in which doctors and health professionals perceive the illness, not as a serious physical or organic disease (a biomedical model), but as a psycho-somatic syndrome (a biopsychosocial model).”
“These two models offer very contrasting ideas about what causes ME/CFS and what generates symptoms. The BPS model posits that symptoms are a consequence of patients’ actions and thoughts, whereas the biomedical model asserts that symptoms are a direct result of biological dysfunction, often triggered by infection.” “The two models are incongruent and hamper progress in understanding the illness and treatment development.” ME/CFS and the biopsychosocial model (2018) |
Dr Geraghty kindly agreed to provide a summary explanation of what his latest research discovered:
“ME/CFS patients consistently report problems with accessing good quality medical care and support. Many recount distressing encounters with doctors. Despite such consistent anecdotal reports, there has been little research into harms and distress in ME/CFS.
| “Engel et al. hoped that the biopsychosocial model would move the focus of medicine away from viewing illness in terms of disease pathology, to a more patient-centred approach that takes account of the individual, their life-course, social history and mental health.”
“Ironically, ME/CFS patients argue that the BPS model applied to their illness downplays the important role of biological abnormalities and over-states the role of psychological and social factors.” ME/CFS and the biopsychosocial model (2018) |
“Our paper sought to investigate the types of harms and distress reported in the literature. The sociologist Ivan Illich published a controversial book, Medical Nemesis, that argued that doctors and the medical community commonly cause harm to patients, not just at the level of the individual patient, but also on a societal level. Such views move harm far beyond simple medical error…”
Read the full review from Dr Geraghty online or as a free download
The ME Association
If you have found this information helpful, then please donate – whatever you can afford – to help us continue with our work to make the UK a better place for people with M.E.
Just click the button below to visit our JustGiving page:
Or why not join the ME Association as a member and become a part of our growing community? For a monthly (or annual) payment you will not only be helping to keep us doing what we do best, but will receive our exclusive ME Essential magazine.
Image credit: wavebreakmediamicro/123RF Stock Photo
Powellite are crown chakra stones that heighten spiritual clarity. They help you to get things done by boosting your staying power and enhance creativity, especially for artists.
What are the experiences that the teachings of the Buddha are founded on? They are sadness, love, and openness. Although they appear to be quite different, sadness and openness are in fact intimately connected. The profound sadness that overwhelms us when we understand the impermanent nature of all phenomena opens us up to the world around us. We open our hearts and begin to notice our fellow beings. We see how we all must face the hardships of life; we understand the fleeting nature of our joys; and we become aware of how much worry, pain, and suffering we all go through in our lives. In this way, we realize that we all share similar painful experiences. Knowing what others go through and feel, we cannot help but sympathize with them, and the wish to help and protect our fellow beings naturally wells up in us. This wish to help and protect arises from love, and the more we open our eyes to others’ suffering and delusion, the stronger our love becomes. Love clears the mind of the thick fog of desire, anger, and ignorance. Love is like the sun that burns through the fog, dissolving it, until only vast openness and clarity remain. When nothing but boundless openness and lucidity remain, we come face-to-face with the basic nature of all phenomena beyond concepts.
Still, as thoughts reemerge, the fog inevitably reappears. But now we know—from our own experience—that freedom and awakening are always right here within us. This realization gives rise to an indescribable joy. We have experienced for ourselves that awakening is a genuine option, for us and for everyone else—how wonderful! The heartfelt wish that everyone may awaken to true freedom is born in us and consumes us to the point where our attachment and delusion seem to dissolve naturally. All the while, we see the world for what it is, utterly impermanent and painful, and our sadness grows ever more profound. Yet our sadness is now accompanied by genuine love and affection and a deep sense of responsibility brought on by the certainty that if we simply stay on course, we will be able to make a true and lasting difference everywhere we go. This is how sadness, love, and openness sustain dharma practitioners.
Reflecting on impermanence is not meant to make us miserable. But without that sorrow of knowing nothing will last, we will never get anywhere on our path. Sadness makes it possible for us to gain something that is much more precious than anything we could imagine. That is why we must contemplate impermanence. If there were nothing to gain, it would be foolish to think about these things—we would just be making ourselves miserable for no reason. But there’s a deep meaning to it all. When it dawns on us what the world is actually like, and we are consequently struck by overwhelming sadness, the next step comes naturally. We draw the logical conclusion that all things are impermanent and begin training in letting go.
Gradually, we are able to let go of all the things we used to chase after blindly, all the things that used to bind us and control us. We develop that ability through a discernment that we normally don’t possess. Instinctively, we begin to let go, because now we know. Whether we like it or not, sooner or later we will be forced to let everything go, so when we know this, it makes perfect sense to lessen our clinging now. Unless we take impermanence into account, we will just continue holding on to things, which in the end will only bring us pain and deprive our lives of meaning. On the other hand, if we have really understood that nothing lasts and that everything is unreal and illusory, then letting go is easy. Actually, it happens by itself without effort. Reflecting on the impermanent and illusory nature of all things is a very powerful practice.
Related: Breaking the Sadness Habit
Understanding impermanence is no magical feat, but it dramatically, almost magically, changes our experience of the world. It makes us capable of actions that used to be impossible. We begin to look at our world and ourselves from a completely new perspective, and that profound shift in outlook is actually at the heart of all dharma practice. In fact, we can measure our spiritual progress by how often we remember that all conditioned phenomena are impermanent. For the most accomplished practitioners, this happens quite spontaneously. They have already then let go.
We begin to awaken, thinking: I’m fooling myself. The way I experience the world and those around me, the way I experience my emotions and myself—it’s all wrong and it’s painful. All the stuff that I worry about—the things I must have, the things I cannot bear to lose, and the things I try to avoid—it all just keeps me trapped. When I see things in that confused way, it has nothing to do with how they actually are. Moreover, since I am doing this to myself, I am only causing my own suffering. How sad and meaningless!
We then commit ourselves to breaking free of this outlook: I’m done! From now on, I want to see things for what they really are. I won’t be a slave to my own delusions anymore. I know my perception of the world is completely out of touch with reality. All my daydreams and fantasies, all my worries and fears—they are all trivial and pointless!
As we think in this way, our wish to be free grows stronger. The power of that wish then transforms into a key that unlocks Buddhism’s vast treasury of methods and instructions.
When we realize that everything is impermanent and unreal, we open up to the pain and suffering of others. That is how love and compassion become heartfelt and genuine. No matter how many praises we sing of love and compassion, such qualities won’t awaken and flourish unless we acknowledge impermanence.
So many wonderful qualities are already present within us, just waiting to be discovered. The key lies in understanding that things are impermanent and unreal. Sadness, of course, is not an end in itself. But deep sorrow comes with realizing that everything we previously took to be lasting and real is actually just about to disappear—and it never even existed in the first place. Such sadness and disillusionment have a wonderful effect. Sorrow makes us let go. As we stop chasing futile and ultimately painful goals, we embark on the spiritual path with superior strength and resolve.
From Sadness, Love, Openness: The Buddhist Path of Joy by Chokyi Nyima Rinpoche © 2018 by Chokyi Nyima Rinpoche. Reprinted in arrangement with Shambhala Publications, Inc.
The post The Secret Strength of Sadness appeared first on Tricycle: The Buddhist Review.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association
The 10th edition of the ME Association clinical and research guide for ME/CFS is a thoroughly revised and updated version that can now be ordered from our website shop.
A must-have for anyone who has been affected by ME/CFS
The guide covers symptoms, assessment, diagnosis, illness management, pharmacological treatments and much, much, more. It informs, educates and helps raise awareness of this all too often misunderstood disease.
It directs readers to more detailed ME Association leaflets from our extensive online library, and summarises all relevant published research. And, it also includes over 600 references to key research papers and clinical trial results.
You can now order the 2018 Purple Book via our website shop, or by telephone to head office: 01280 818964 weekdays, between 9.30am and 3.00pm.
Everything that health professionals need to know
“…the most comprehensive, evidence-based summary currently available…”
The ‘Purple Book’ as it has become known, also discusses the very welcome review of the NICE clinical guideline.
And it details all the research, including of the ME/CFS Biobank, that is being funded by the ME Association Ramsay Research Fund.
This 147-page authoritative publication represents the most comprehensive, evidence-based summary currently available and contains everything that health professionals and patients need to know about this devastating neurological disease.
Free copies available…
We still have funds available in our medical education budget to send free copies of the guide to health professionals.
We just need to know their name(s) and surgery/hospital address.
…with accompanying letter
The clinical and research guide will then be sent with an accompanying letter from myself in which I also highlight the ongoing NICE clinical guideline review and our concerns about graded exercise therapy (GET).
In support of the ME Association’s position on GET (i.e. that it should be withdrawn as a recommended treatment from the current NICE guideline), we are also including a copy of the recent letter from Professor Mark VanNess and the Workwell Foundation research group in America.
Comments on both content and presentation of the MEA purple book are always welcome and should be sent for my attention to our head office via email.
You can read extracts from the ‘Purple Book’ on our website in the ‘What is ME?’ section. However, to read the full content, including the extensive research section, you will need to order the full guide.
You might also be interested in the Index of ME/CFS Published Research which we update monthly, and is available as a free download.
Chronic fatigue syndrome, or ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession – according to an MP who has been campaigning in Parliament to change attitudes.
Carol Monaghan, MP for Glasgow North-West, led the debate on M.E. in Parliament last week.
During an emotional Westminster Hall debate, Scottish National Party MP Carol Monaghan argued that graded exercise therapy (GET) – offered most commonly on the NHS – is often damaging and in need of serious revision.
But researchers behind a trial of the therapy say it is a safe method of treatment.
Guidelines on how the illness should be treated in England are currently being updated.
In the debate, Ms Monaghan said:
“Characterised as ‘yuppie flu’, and misunderstood by doctors and politicians alike, we need properly-funded biomedical research into the causes and treatment of those with ME.
“Less than £1 is spent annually on each ME patient in the UK.”
GET involves patients doing increasing amounts of exercise, over weeks and months, depending on their individual needs to aid their recovery.
But MPs cited stories from constituents suffering with ME who say that GET has made their illness worse.
ME sufferer Ellie Bunce was diagnosed when she was a student.
Ellie Bunce, 21, was diagnosed with ME in 2016 and it has forced her to put her sporting ambitions on hold.
“At the time I was 19, a student athlete – in my second year of university – with hopes of rowing internationally. I was fit, active, I ate well, I exercised.
“I was happy and positive and yet one day I woke feeling as if I was dying. My whole body ached in a way I’d never felt before.”
Ellie says the first specialist she saw suggested her lifestyle was to blame.
“He said I should make more effort to wake up at 09:00, get showered, dressed and then go on a long walk. This was my ‘treatment plan’.
“However, the more I pushed myself to get out of bed, the more ill I got.”
After several months, Ellie was eventually diagnosed with ME.
“Day-to-day every inch of my body is in pain, I struggle to read and concentrate, I’m too tired to move.
“I spend upwards of 20 hours in bed a day. I’ve been stripped of my hobbies, energy and work.
“I live in the hope that one day doctors will find a treatment and that one day I will be better.”
Future lawsuits
The health watchdog, NICE, is currently updating its guidelines for treatment in England, but publication is not due until 2020.
At the debate, Liberal Democrat MP Ed Davey called for GET to be suspended before the NICE guidelines are reviewed, raising the possibility that there could be future lawsuits from ME patients whose condition has worsened from the treatment.
In 2012, the ME Association conducted a survey of almost 1,428 patients diagnosed with the condition.
It found that of those who were prescribed GET, the symptoms of 12% improved, 14% were unaffected and 74% suffered worse symptoms.
However, other health experts argue that GET is a proven and safe method of treatment.
The PACE trial
In 2011 a large-scale trial, known as the PACE trial, considered treatments including GET and Cognitive Behavioural Therapy (CBT).
Ellie Bunce once hoped to row internationally.
Prof Michael Sharpe, one of the study’s lead researchers, said:
“The trial found that GET can be moderately helpful in reducing fatigue and disability. We also found that it didn’t cause harm.
“So the question is why is there a contradiction between the trials and what people are saying? Well it could be because diagnosis is a bit hit and miss, it could be that GET hasn’t been done in a careful way.
“More research is needed to find out why there is such a difference.”
A NICE spokesman said:
“We do recognise the controversy about the currently-recommended treatments and will discuss with the expert committee, once appointed, before deciding on any action prior to the completion of the new guideline.”
Social media support
There was an emotional outpouring of support on social media during the debate from sufferers, many of whom feel marginalised and forgotten, with no cure for their illness in sight.
A tweet from Emma, who said the illness had robbed her of her 20s, was typical:
I can't stop sobbing as I watch #MEdebate. This illness has stolen my 20s from me. I am so lucky to have supportive friends and family, and a fantastic employer. But my life is a shell of what it was. #CBT and #GET did nothing for me. We need more research.
— Emma (@EmmaItsemma88) June 21, 2018
What is ME?
Charities also welcomed the debate in Parliament and John Siddle of the ME Association said:
“We are extremely grateful to Carol Monaghan for securing the debate – but in truth, the hard work starts now.
“Many doctors still don’t know how to diagnose and manage ME, and lack of research means that we still don’t have any effective forms of treatment.
“This is a completely unacceptable situation for a disease which affects 250,000 people and their families.”
The NICE clinical guideline is the main influence on how people with ME/CFS are diagnosed and managed in NHS primary care. It particularly applies to England and Wales but is also influential in Northern Ireland and Scotland.
The ME Association considers the current guideline to be unfit for purpose and welcomed the decision to fully review and update it. We remain fully committed to the review process.
The guideline review process is necessarily a long one and the new guideline is not expected to be published until October 2020.
As stakeholders, the ME Association is able to submit formal comment at several stages and attend workshops.
NICE draft scope consultation
The most recent workshop occurred last month and discussed the initial draft scoping report. This document sets out the parameters by which the main guideline will be written. It provides a template, explaining who the guideline is for and the subjects that it will deal with.
Following the workshop, and the feedback received at that time, NICE revised the document and have now issued the final draft scoping report.
The scoping report is not a detailed document, but it should reference any relevant subject areas and provide an overview and template for the full guideline.
We don’t want the scoping report to miss any important areas because that could mean the full guideline misses them also.
We have until 5.00pm on Thursday, 26th July, to make a formal response; although NICE is also accepting comments from individuals.
If you would like to submit comments to the ME Association, we will try to ensure they form part of our formal stakeholder submission. But please keep your comments brief and to the point.
We cannot, at this stage, accept comment on desired main guideline content. This exercise is solely about the scoping report and not the detail that will comprise the full guideline.
Here are the details you will need:
We will aim to submit our stakeholder response in the next four weeks, but if you have anything you would like to tell us – that you feel is wrong or is missing from the scoping report – then send us your comment sooner rather than later, or complete the NICE comment form as an individual.
The deadline for the Scope Consultation and for Committee Recruitment is 26 July 2018.
Guideline committee recruitment
NICE are advertising for members to form the important clinical guideline committee. The committee is comprised of health professionals with experience of or an interest in ME/CFS and will also include up to four lay members i.e. non-professionals with personal experience of the condition.
Lay members
NICE is seeking people who are willing to champion patient and carer perspectives. A lay member can be a patient, unpaid carer, someone from a stakeholder group, or member of a charity etc. who has gained experience of ME/CFS and of healthcare and other relevant issues.
“We are looking for people who have an understanding of ME/CFS and the issues important to people with ME/CFS. This understanding could have been gained:
“Applications are especially welcome from people with ME/CFS (age 16+) from across the range of illness severities, and from parents/carers of people with ME/CFS.
“Any questions? Contact the Public Involvement Programme at PIP@nice.org.uk
“Lay members have the same status and carry out the same functions as other members of the Committee for the duration of their involvement. As a lay member, we are looking for people who can help to ensure that the views, experiences and interests of people affected by the guidance inform the Committee’s work.”
“This may include:
If you are interested in applying for lay membership of the guideline committee, be sure to consider if you can reasonably commit to the 2-year period, expected travel (although some dispensations will be made), the need for ‘homework’ and to actively participate at meetings.
Full details of the role and your responsibilities can be found on the NICE website. Deadline for lay member applications is 5.00pm Thursday, 26 July 2018.
Vivianite brings physical and emotional healing and stimulates compassion via the higher heart chakra. It relieves stress and burnout, aids goal setting, inspires clearer communication and boosts intuition.
Healing frequencies for psychic ability and spiritual awakening! - Many FREE audios to try!
Learn more & get the free app at http://onelink.to/pjmmu7 😀😀
Android version now available!
Learn to manifest money, by combining golden yellow manifestation crystals with the LOA aka the laws of attraction. These universal laws help to increase abundance and prosperity in your life.
By John Siddle and Nicola Bartlett, Daily Mirror, 22 June 2018.
A Government minister has demanded Ricky Gervais publicly apologise for a joke branding ME sufferers “lazy”. The Office funnyman was called out in a parliamentary debate and accused of stigmatising the disease.
Steve Brine, MP, Minister for Health and Social Care.
MP Steve Brine criticised Gervais for an old gag where he allegedly described ME as “the one where…‘I don’t feel like going to work today’.”
The Minister for Primary Care said:
“We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times.”
Mr Brine used the the offensive joke as an example, telling MPs:
“I have to say that Ricky Gervais is a very talented comic but given that he’s quite active on Twitter, maybe he could just be asked to retract that and apologise to the ME community for that comment today on Twitter.”
The minister was speaking during a three-hour parliamentary debate on the lack of funding for medical research into ME.
Politicians called for controversial psychotherapy and exercise therapies recommended by the NHS after a ‘flawed’ medical trial must stop because it is making patients worse.
They called for an end to stigma and myths surrounding ME.
Westminster Hall was told how people with ME are six times more likely to commit suicide.
ME (myalgic encephalomyelitis) affects 250,000 people in the UK, with tens of thousands left bedbound, housebound and unable to work.
Sufferers have had to face barbs of laziness and hysteria after the illness was dubbed ‘Yuppie Flu’ in the 1980s.
Carol Monaghan (SNP, Glasgow North West) told the debate how ME costs the UK £3.3bn per year.
She said: “Despite the number of people affected, and the devastating affect this disease has on suffers and indeed, their families, it is very much a hidden illness.
“Characterised as ‘yuppie flu’, and misunderstood by doctors and politicians alike, it receives little funding, and treatment is often damaging.”
This video begins with the stand-up routine from Ricky Gervais and was on published on YouTube in 2009
A spokesman for the ME Association warned about the dangers of the comedian’s remarks:
“Ricky Gervais might think he’s just funny but by peddling outdated stigmas about a disease in which people are taking their own lives is far from a joke.
“It would be fantastic to see Gervais spearhead our call for more funding and research into ME.
“ME is real. It’s devastating. It leaves people, at best, struggling to work. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society.
“More must be done to end the torment of so many missing behind closed curtains.”
Rochdale Online: 22 June 2018.
Liz McInnes, Member of Parliament for Heywood and Middleton, has called for “much more to be done to tackle ME” during a three-hour debate about the debilitating illness at Westminster Hall on Thursday (21 June).
The debate, led by Carol Monaghan MP (SNP, Glasgow NW) and Nicky Morgan (Con), heard numerous accounts from MPs about Myalgic Encephalomyelitis (ME) and its effects on those who suffer it, and how much more needs to be done to raise recognition, diagnosis and treatment of this severe illness.
Liz McInnes, MP for Heywood and Middleton, Greater Manchester.
Liz McInnes MP raised the heartbreaking case of Merryn Crofts from Norden, one of only two people to have ME stated as the cause of death.
Earlier this year, a coroner ruled that 21-year-old Merryn Crofts was the youngest person to die from the illness after a six-year battle with very severe ME.
Liz McInnes MP said: “ME is such a misunderstood illness, as the sad case of Merryn Crofts from Norden demonstrates.
“Merryn Crofts was my constituent and lived in Norden. I spoke with her Mum, Clare, this week who told me that the reports about Merryn in the Newspapers didn’t really cover the whole of Merryn’s condition.
“Merryn was totally bedbound; she physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position. She was hypersensitive to noise, light, touch and movement, and suffered so badly from pain that she could not get out of bed.
Merryn was bed-bound for the last three years of her life.
“After speaking with Merryn’s mum Clare and taking part in the Westminster Hall debate today, it’s clear to me that much more needs to be done to tackle ME and to help those who suffer its awful symptoms.
“Among other things, we need to invest more in training for our Doctors, especially General Practitioners who are the clinicians likely to be the first port of call for those suffering with ME – our GPs need to have the skills to be able to recognise the signs & symptoms and to signpost patients to the appropriate specialists.”
Addressing the debate, Merryn’s family added:
“It was a momentous day for ME as the Scottish MP Carol Monaghan raised a three-hour cross-party parliamentary debate about it. It was an amazing debate with much support and hopefully the start of change for people with ME.
“It was especially poignant for us as yesterday was the one year anniversary of Merryn’s funeral and so lovely on that day to hear Carol Monaghan speak Merryn’s own words at the start of her opening speech. We’re so proud our darling girl is still helping to bring change and stop the continued abuse of people with ME.
“These were Merryn’s words that Carol so beautifully read out:
“Having Severe ME is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.
“It snatches the most simple things away from you, like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse saying no every time someone asks again.
“Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless and, if I was physically able to type, I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”
Since 2012, the government has invested an average of £558,333 each year into ME research – just £2.23 per patient, per year.
Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital-based clinics, many doctors still don’t know how to diagnose and manage ME.
“Having Severe ME is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.”
Lack of research means that there aren’t any effective forms of treatment, despite quality of life studies revealing the level of disability experienced with ME can be just as great as many other serious medical conditions, including cancer and multiple sclerosis.
While some people with ME do improve over the course of time, it is only a small minority that return to full normal health.
A spokesman for the ME Association, which campaigns to make the UK a better place for people with the illness, said:
“ME is real. It’s devastating. It leaves people, at best, struggling to work. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society.
“More than 250,000 people – and 250,000 families – are affected by this devastating disease and it is not before time that this horrendous illness has been debated in parliament.
“We are extremely grateful to Carol Monaghan MP for securing the debate – but in truth, the hard work starts now. One in four are so severely affected that they are housebound, bedbound, and in some cases unable to shower, clothe, or feed themselves.
“People are taking their lives because they cannot bear the torture this illness brings. Others describe themselves as rotting behind closed curtains.
“This is a completely unacceptable situation for a disease, costing the UK economy around £3.5billion in lost taxes, healthcare and benefit costs.
“There is no cure – and the longer it will take to find one unless funding dramatically increases.”
For more information on ME, or to donate towards medical research, visit: meassociation.org.uk
Elestial quartz crystals bring you an infusion of high vibration love and light from the higher realms. They aid contact with spirit beings and angels, and boost clairvoyance, clairaudience and clairsentience.
ME Association Press Release, By John Siddle, 21 June 2018.
MP’s demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK – and the immediate end to NHS-recommended treatments that are making patients worse.
Carol Monaghan, MP for Glasgow North-West, led the debate on M.E. in Westminster Hall.
Less than £1 is spent each year on people suffering from the devastating invisible illness M.E. (myalgic encephalomyelitis), a condition which leaves tens of thousands bedbound, housebound and unable to work.
Parliament heard in a landmark three-hour debate of the chronic lack of funding for medical research and how many doctors still don’t know how to diagnose or manage the condition.
End to controversial therapies and to stigma
Politicians said that controversial psychotherapy and exercise therapies recommended by the NHS after a flawed medical trial must stop NOW – because they are making patients worse.
And they called for an end to the stigma and myths surrounding M.E., which at worst, leaves sufferers to endure a tortuous existence.
Westminster Hall was told how people with M.E. are six times more likely to commit suicide.
Carol Monaghan (SNP Glasgow North West) told how ME costs the UK £3.3bn per year.
She said: “Despite the number of people affected and the devastating effect of the disease on sufferers and their families, it is very much a hidden illness, which is characterised by some as ‘yuppie flu’ and misunderstood by doctors, the public and politicians alike.”
M.E. tragedies
Westminster Hall heard of the tragic case of 21-year-old Merryn Crofts, who last month had M.E. listed as the cause of her death at inquest, and how ME Association fundraising manager, Helen Hyland, broke the news of her husband’s suicide to her children.
Yet Ms Monaghan added:
“Some people consider M.E. to be a psychological condition, despite the fact that people with M.E. are not allowed to be blood or organ donors.
“Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition.
“I wonder what they have to fear from proper biomedical research into M.E. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on M.E. treatment and care, as medical professionals they should surely support that.”
The discredited PACE trial
Ms Monaghan drew particular attention to the PACE trial results in 2011, that examined graded exercise therapy (GET) and cognitive behaviour therapy (CBT).
The researchers claimed the results demonstrated both treatments were ‘moderately’ effective and led to recovery in over a fifth of patients.
But the trial has since faced intense criticism, and not only from patients in the UK. Clinicians, researchers, as well as charities, like the ME Association, have all expressed concern about how the results were obtained, analysed and presented.
Parliament has previously heard claims that the PACE trial data was deliberately flawed to “remove people from long-term benefits and reduce the welfare bill”. The PACE trial endorsement of GET and CBT helped form the basis of the NICE clinical guideline – which is now being reviewed.
PACE has had a wide-reaching influence
Ms Monaghan said one of the key authors behind the PACE trial, Professor Michael Sharpe, admitted that some involved in the trial had worked for insurance companies.
She said:
“The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions.
“Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work.
“PACE is unique in UK medical history, in that it was part-funded by the DWP.
“The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:
“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”
“I will leave hon. Members to make up their own minds about that.”
Westminster Hall was told how the U.S. Center for Disease Control (CDC) and the Dutch Health Council have both abandoned GET as a treatment.
Ms Monaghan added:
“If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.”
‘Unbecoming’ behaviour?
“Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP”.
“I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty.
“If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?”
Ministerial response
Minister for Health and Social Care, Steve Brine, was asked how the Department for Health is supporting training for medical practitioners on ME care and treatment, and asked if he would support proper funding for medical research into the diagnosis and treatment of ME.
Steve Brine, Minister for Health and Social Care, and Conservative MP for Winchester.
Mr Brine said the government invests £1.7bn each year into health research.
And stated that the National Institute for Health Research and the Medical Research Council would welcome “high-quality” research into “all aspects of ME… to make a scientific breakthrough”.
He described the need to find a breakthrough as a “matter of good Christian humanity” and promised to help increase the awareness of M.E. with GPs.
He reiterated that patients with M.E. symptoms should be referred to NHS specialist services – within six months for mild symptoms, three months for moderate symptoms and immediately for severe symptoms.
But Mr Brine admitted that access to services remained “a big and ongoing issue” and that the configuration of services was down to local commissioning groups.
He added that all schools must have arrangements in place to support, with flexibility, children with ME.
NICE guideline review
On the NICE guidelines, he said it was a “jolly good job” the position on M.E. is being updated but said it would be “wrong for ministers to interfere” with the process.
On benefits, Mr Brine said the “DWP recognises that ME is a real and disabling condition” and that every patient must be assessed on a individual basis.
He added:
“When assessing claimants, healthcare professionals are expected to be mindful of the fact that many illnesses—including ME—produce symptoms that vary in intensity over time, and they are instructed not to base their opinion solely on the situation observed at the assessment.
“The DWP assures me that all healthcare professionals are required to read an evidence-based protocol on ME as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition.”
‘A completely unacceptable situation’
The ME Association campaigns to make the UK a better place for people with M.E. A spokesman said:
“A three-hour parliamentary debate on M.E. is not before time. We are grateful to Carol Monaghan for securing the debate, to those MP’s who took part, and to ME Association members for engaging with their parliamentary representatives ahead of the debate.
“Despite being recognised by the World Health Organisation as a neurological disease – and an earlier report to the Chief Medical Officer calling for more research and a network of hospital-based clinics – many doctors still don’t know how to diagnose and manage M.E. and lack of biomedical research means that we still don’t have any effective forms of treatment.
“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that M.E. is costing the UK economy billions in lost taxes, and through healthcare and benefit expenditure.”
The images above of people with M.E. have been taken from the ME Association, Real M.E. campaign. It seeks to demonstrate that this devastating neurological condition can affect people from all walks of life, at any age, and that it doesn’t discriminate in terms of gender or race.
Following yesterday’s landmark three-hour debate led by Carol Monaghan, MP, in Westminster Hall on myalgic encephalomyelitis, an official transcript was produced that enables us to read exactly what Steve Brine, the Minister for Health and Social Care, had to say in response to the issues that were raised.
You can still watch and even download the video of the debate, and the ME Association will be publishing the press release we produced by way of summary of the proceedings later today, along with comment from Dr Charles Shepherd – who was present at the debate – and from Helen Hyland – our fundraising manager – whose personal story was read out by her MP, Stephen Kerr.
The debate received wide cross-party support, and at it’s peak, twenty-five MP’s were present, with thirteen making contributions. There were also several people affected by M.E. at the meeting. The number of MP’s was seen by all concerned as a significant contribution especially for a Thursday afternoon, and underlined the importance of M.E. and the pressing need for change.
The Minister spoke for approximately 24 minutes, and his formal response was followed by a short speech from Carol Monaghan, which closed the debate at 4.17pm.
Read The Full Hansard Transcript
The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)
“I shall start where everyone else has started and thank the hon. Member for Glasgow North West (Carol Monaghan), who secured this important debate, very much. She did so along with my right hon. Friend the Member for Loughborough (Nicky Morgan), who has to be in her constituency today to deal with a royal visit—lucky her.
M.E. is an incapacitating condition with a plethora of symptoms
Steve Brine, Minister for Health and Social Care, and Conservative MP for Winchester.
“Raising awareness of this debilitating condition is critical, and the hon. Member for Glasgow North West has undertaken significant work in this area over a number of years. Thirteen—lucky for us—Back Benchers spoke in today’s debate. I counted 25 Members present at our peak, which is excellent. I spend a lot of time with the hon. Member for Strangford (Jim Shannon) in Westminster Hall, it must be said, but that is a lot of MPs for a Tuesday afternoon, let alone a Thursday afternoon, so that is excellent.
“As we have heard, ME, otherwise known as chronic fatigue syndrome, is an incapacitating condition with a plethora of symptoms, primarily characterised by long-term fatigue, chronic pain and post-exertional symptoms of malaise, to name but a few. There are many more and we have heard some excellent testimony of those from Members on behalf of their constituents.
M.E. can lead to almost no life
“As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people.
“I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her but she knows who she is and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.
Praise for M.E. documentary Unrest…
“I am surprised that other than the hon. Member for Bristol East (Kerry McCarthy), nobody mentioned “Unrest”. I know it well. Some constituents came to see me to tell me about the film. It had screenings in Winchester and Chandler’s Ford in my constituency, which were oversubscribed—packed to the gunwales—and there was not a dry eye in the house.
“I pay great tribute to Jennifer and her partner Omar who made that film. I am sure there were times when it gave Jennifer’s life a great purpose, but I am sure there were times when she wanted to say, “Get that bleeping camera out of my life!” There is a touching moment at the very start of the film when she says that when she was a young girl, she wanted to eat the world “whole”, because she wanted to see it all and do it all. That went to the heart of her great disappointment that she was so sick.
“Jennifer set out very clearly and movingly the sheer ups and downs of this condition. For some, it is almost a constant down. I was struck by watching her at the Princeton University reunion day, during the rather surreal procession through the streets by old boys and girls from Princeton. She so enjoyed seeing old friends that day and looked full of life, but within an hour of it finishing she was absolutely poleaxed on the floor, saying that she felt her eyes were being pushed out of her head from the inside. It was horrible to watch.
“It was interesting how the film moved around the different wild and crazy treatments that are out there on the internet. If hon. Members google any condition, they will see lots of wild and crazy treatments, but that is particularly the case with ME. One of the saddest things in it, although it covered it well, was the point that my hon. Friend the Member for Cheltenham (Alex Chalk) raised of the suicides resulting from this condition.
…and for Millions Missing demonstrations
“Millions Missing was mentioned by many Members, and I see some people wearing t-shirts in the Public Gallery. The hon. Member for Ealing North (Stephen Pound) is right that it has had some bad PR, but it is getting its act together.
“Millions Missing is an absolutely brilliant way of encapsulating the problem. A number of Members mentioned the shoes; I was particularly moved by the messages on the shoes. They were outside Richmond House, where the Department of Health used to be, as part of the Millions Missing campaign.
“The mission was to write what you miss; somebody had written on a pair of ballet shoes, “I miss dancing in these shoes.” That was really moving and a human way of putting it. I might touch on the film again a little later.
Stephen Pound commented:
“I assure the hon. Gentleman that I was not implying any absence of PR skills on the part of the advocates and the people who suffer from this debilitating disease; I was anthropomorphising the actual disease itself.
“I stole the words of the hon. Member for Cheltenham (Alex Chalk) when we pitched this debate to the Backbench Business Committee, because he was not in Westminster Hall at the time.”
“That is so unlike the hon. Gentleman. Good clarification.
The stigma surrounding M.E.
“The stigma quite rightly has been mentioned by pretty much everyone who has spoken today. We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times.
“I have seen a clip of Ricky Gervais in one of his otherwise amusing stage shows, when he says of ME, “Yes, that’s the one where they say I don’t want to go to work today.” Ricky Gervais is a very talented comic, but given that he is quite active on Twitter, perhaps he could retract that and apologise to the ME community today. Perhaps he could put #ME so we can look out for it.
“My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong. His intervention was timely and good.
Minister is in no doubt as to the legitimacy of M.E.
“The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer.
“People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.
“That stigma can and does play a part in the development of the co-morbid symptoms of depression and anxiety, particularly for young people—I will come on to them in a minute—who keenly feel the consequences of the resultant social isolation at that moment of their development. As we have heard, suicide is not unheard of.
“We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it. The hon. Member for Plymouth, Sutton and Devonport (Luke Pollard) mentioned that MND is being talked about, and he is absolutely right. He is a very good communicator, and I think this will probably be one of his next Facebook Live sessions.
“He is nodding. It is important that we raise awareness and educate people, including me, about the condition and its impact on people’s lives.
M.E. Research
“I will now turn to the two issues that have primarily been debated today, research and treatment. On research, the Government invest more than £1.7 billion a year in health research via the National Institute for Health Research and the Medical Research Council through UK Research and Innovation.
“The NIHR and MRC welcome high-quality applications for research into all aspects of CFS and ME, which would certainly include the biomedical research that the hon. Member for Glasgow North West spoke about in her opening remarks.
“Since 2011, the MRC has funded seven projects on CFS/ME totalling £2.62 million, and it is ready to support further applications of the highest scientific quality, which is required to make those scientific breakthroughs.
“My hon. Friend the Member for North West Norfolk (Sir Henry Bellingham) is no longer in his place, but he spoke about the Norwich Research Park—didn’t he push that a few times?—which sounds very promising. I look forward to hearing more about it, and I feel certain that he will tell me.
“The MRC has had an open cross-board highlight notice on ME since 2003. It was updated in 2011 alongside a bespoke funding call in that year. ME research remains an area of high strategic importance for the MRC.
“Applications that focus on the underpinning mechanisms of ME are encouraged, with priority areas including immune dysregulation—[Interruption.] Sorry, I am distracted by someone shouting about stopping something outside—I think he is saying, “Stop ME!”. The priority areas include pain, improved sub-phenotyping and stratification of ME, and mechanisms of ME in children and young people.
“A number of people mentioned the late Baroness Jowell. I was very privileged to meet her. I did so just the once, but I was left in no doubt about her resolve on the issue of brain tumours. Let me say in reference to her and to the research environment that, as my Parliamentary Private Secretary, my hon. Friend the Member for South Suffolk (James Cartlidge), reminded me, that journey started around the time of a Westminster Hall debate. Perhaps that is a good sign.
“Our challenge with brain tumour research is the lack of high-quality research proposals that have come forward. The late Baroness Jowell was passionate about stimulating the research community to get that situation changed, and we have latched on to that. That is one of her great legacies. I would hazard a guess that her greatest legacy is yet to be reached, but that is one reason it is important to mention her today.
“The NIHR has, since 2011, provided £3.37 million of funding for projects and training on ME. That might not be termed biomedical research, but as with other disorders, given that the cause and mechanisms of the condition are still poorly understood, it is important that we carry out both biomedical research, to further our understanding, and applied health research, to improve the treatment offered to people with ME now and to help to improve their symptoms and quality of life.
“The NIHR and the MRC recognise that ME is a debilitating condition and are working with the UK CFS/ME Research Collaborative, which was mentioned towards the end of the debate, and with patient representatives on how best they can support a joined-up approach to encourage high-quality research into this complex disorder. I mentioned that Baroness Jowell is a good example of how to start such research. They hope to be able to update colleagues on those discussions by the end of the year, and I for one will look keenly for that update.
“For Members who do not know about that important collaboration, it was set up in 2013 to promote high-quality basic and applied research into ME. The CMRC brings together researchers, major funders and charities, and provides them with a mechanism for working together in a co-ordinated and collaborative way, increasing awareness of ME in the research community—that is so important if we are going to stimulate applications—highlighting priorities for research funding and increasing such funding. Both the NIHR and the MRC sit as observers on the CMRC board.
“Everyone who contributed to the debate spoke passionately, but the hon. Member for Ealing North spoke particularly passionately, and I liked his point about humanity. This is a matter of good Christian humanity in many ways.
GP training and medical education: online course for M.E.
“The Royal College of General Practitioners oversees GP training in England. It provides an online course for GPs and other primary care practitioners that includes an overview of the presentation, diagnosis, assessment and ongoing management of ME. The course highlights common misconceptions about ME and considers the challenges that surround that complex condition for patients, carers and primary care professionals. It is produced as part of the METRIC study, which is funded by the NIHR.
“Of course GPs can always know more and learn more, but let me speak up for them for a moment. They are called “general practitioners”. Be a GP for a day—it is incredibly difficult to know everything about everything and to be a master of all. General practice is, though, where most patients with ME are likely to be managed, certainly in the first instance.
“The condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in England and a key part of GPs’ qualifying exams.
“Although I understand hon. Members’ points about raising awareness among medical professionals, and as a result of the debate I will redouble my efforts to do that as part of my role as Minister for primary care, all GPs certainly should be aware of ME, and should maintain their clinical knowledge of it and other conditions, as part of their commitment to continuing professional development.
“Indeed, I have resolved—I have already sent a note to myself—to send a copy of the report of the debate to Professor Helen Stokes-Lampard, who currently leads the RCGP, and to ask for the college’s latest thinking about this subject.
Diagnosis and treatment
“Before any medical condition can begin to be treated, it must be diagnosed. That goes to the heart of our challenge. As the symptoms of ME often resemble those of many other debilitating illnesses—we heard about Lyme disease—there is no test with which to make an accurate diagnosis.
“ME, therefore, is not always easy to diagnose, to put it mildly. Diagnosis relies on clinical observation of symptoms by healthcare professionals. We understand that that can be frustrating, to put it mildly, for patients—and, it must be said, for their clinicians.
“People with ME should be referred to a specialist service, where care should be based on their needs, on the type, complexity and severity of their symptoms, and on the presence of comorbidities. That decision should be made jointly by the patient and their healthcare professionals.
“As the shadow Minister said, referral to specialist ME care should be offered within six months of presentation to people with milder symptoms, within three to four months of presentation to people with moderate symptoms, and immediately to people with severe symptoms. Clinicians are responsible for advising patients about available treatment options.
“Of course I am aware that access to services for those with severe ME is a big and ongoing issue. Under the Health and Social Care Act 2012, the configuration of services is a matter for local NHS commissioners, who have to be best placed to deliver services for their area.
“A number of Members referred to the report of the chief medical officer’s independent working group on ME, which was published in 2002. Following that, a central investment programme of £8.5 million was established to address the service gaps across England—I am responsible for the NHS in England.
“That included the establishment of 13 centres of expertise across the country, 36 multidisciplinary community teams for adults and 11 specialist teams for children and young people, and facilitation of access to advice on clinical management for patients, families and health professionals.
Social care services
“Linked to that—the Department is, of course, now called the Department of Health and Social Care—the vast majority of people with severe ME and their families will come into contact with social care services at some point.
“The Care Act 2014 requires a local authority to carry out a needs assessment where an adult or carer appears to have care and support needs. The local authority must then decide whether the person has eligible needs by considering the outcomes they want to achieve, their needs, and how those impact on their overall wellbeing. Where a person is assessed as having eligible care and support needs, those must be met by their local authority.
Children and young people with M.E.
“Let me say some more about children and young people, who were mentioned by a number of Members. There is a powerful moment in “Unrest” where a young lady is celebrating her birthday. She says, “I remember my 16th birthday in this bed, and my 17th birthday, and my 18th birthday”—and she goes on through; I think she was celebrating her 22nd birthday in the film. Although access to services was raised, I know that access to education is also a huge issue for children and young people with ME.
“All schools have a legal duty to make arrangements to support pupils with a medical condition in school. Guidance to schools states that they should put in place arrangements that show an understanding of how medical conditions affect a pupil’s ability to learn and give parents and young people confidence in the school’s ability to provide effective support for their condition.
“Children and young people with ME should have an individual healthcare plan, which should normally be drawn up in partnership with the school, healthcare professionals, parents and the young person, and should be tailored to their needs.
“Schools and other services should work together to ensure that children and young people with ME receive an education that is flexible and appropriate. That could mean programmes of study that rely on part-time attendance, in combination with alternative provision or home schooling, which was mentioned.
“Consideration should also be given to how children and young people are integrated back into school after a period of absence, when they are feeling better and, hopefully, more able physically to cope.
The NICE clinical guideline on ME/CFS
“A lot was said about NICE guidelines, which are clearly a sensitive topic and a source of much unhappiness among Members and the wider ME community. According to NICE guidelines, recommended treatments for ME include cognitive behavioural therapy and graded exercise therapy.
“I know that many patients disagree with those treatments, and we heard powerful testimony about that. The NICE guideline is clear that there is no one form of treatment to suit every patient; that the personal needs and preferences of the patient should be taken into account; that doctors should explain that no single strategy will be successful for all patients; and that, in common with all people receiving NHS care, ME patients have the right to refuse or withdraw from any part of their treatment that they do not agree with or they think is doing them harm.
“As we heard, the NICE guideline is being updated—a jolly good job, too. NICE will look at the current evidence base, including the PACE trial, which has been debated at length in the House before. Of course, we welcome NICE’s decision to undertake a full review of ME guidelines.
“Many of the ME charities we have heard about today are registered to take part in the guideline development process, but NICE is the independent expert body responsible for developing robust, evidence-based guidance for the NHS to design services that are in line with the best available evidence, and no one should hide from the evidence.
“It would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.
Carol Monaghan commented:
“The Minister has rightly said that any patient has the right to withdraw from medical treatment.
“However, when the DWP is saying that patients must undertake graded exercise therapy, and when health insurance companies are saying that they must undertake graded exercise therapy, it puts the patient in a very difficult position.”
“I fully appreciate that point—the hon. Lady put it on the record very well earlier—which takes us on very neatly to welfare benefits.
Welfare benefits
“The hon. Members who requested the debate also flagged the issue of benefits. I know they would like, and are having, an ongoing conversation with the DWP. I am clearly not a DWP Minister—they wanted a Health Minister to respond to the debate, and that is what they have.
“The DWP obviously recognises that ME is a real and disabling condition. Entitlement to benefits depends on the disabling effects of the condition, which of course must be taken on an individual basis. When assessing claimants, healthcare professionals are expected to be mindful of the fact that many illnesses—including ME—produce symptoms that vary in intensity over time, and they are instructed not to base their opinion solely on the situation observed at the assessment.
“The DWP assures me that all healthcare professionals are required to read an evidence-based protocol on ME as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition.
“From what I have heard today, Members clearly feel that that is not happening— certainly not in a consistent way. I will take an action from the debate to send a copy of what has been said to the relevant Minister—I believe it is the Minister for Disabled People, Health and Work, my hon. Friend the Member for Truro and Falmouth (Sarah Newton)—at the DWP.
“However, I encourage members of the all-party group to seek more and continuing engagement with the DWP on this issue. I will certainly follow that up with them.
Closing remarks
“Once again, I thank the hon. Member for Glasgow North West, who opened the debate, and her colleagues who secured the debate through the Backbench Business Committee for raising the issues of ME research and treatment on behalf of those affected—their constituents and mine.
“I welcome this and all other opportunities to raise awareness within the House. Ultimately, raising awareness is what we can do, and that can lead to action and real change, as we saw within the brain tumour community.
“I thank the ME charities—they are very active in my part of the world, in Hampshire—for their continuing work in this area. What has been fascinating today, as always with debates in my portfolio, is that I have not heard one single person mention their party political colours.
“There really is no politics in ME, and nor should there be. I want to see us come together at our true, cross-party best to focus on the needs of people with ME and see if we can move the research agenda forward in this area.
“I think the hon. Member for Glasgow North West said in her opening remarks that professionals should welcome research, because evidence-based treatment is ultimately the basis of their training. I welcome such research.
“I echo what has been said, and on the email that she read out earlier—clearly, I have not seen it and have only heard her reporting of it; I think she will give it to me afterwards—I hope that that will be the second apology received as a result of my remarks today. I look forward to being copied into that.
“As I said earlier, the NIHR and MRC are speaking to the UK CFS/ME Research Collaborative and patient representatives about how they can best support a joined-up approach to high-quality research into this complex disorder.
“I hope they will update colleagues about those discussions later in the year. I will end with what Jennifer said right at the end of “Unrest”:
“every book I read…said, ‘when you fall ill, either you…find the cure or die trying.’ It always ends in triumph or tragedy. But that’s not my story—at least not yet.”
“That is how she put it.”
Carol Monaghan, MP for Glasgow North West
“I thank hon. Members once again—Thursday afternoon is not an easy time to stay behind for a debate, and I really appreciate the fact that they have done so. I also appreciate the great support from the people in the Public Gallery, many of whom are living with ME. It has been tough enough for us to sit here for three hours, so it must have been a hard slog for them. I hope they do not feel the impact of the debate too badly over the next few days.
Social media support for Members
“I have been following the debate on Twitter, and it has been interesting to see the messages of support coming in for individual Members. People really are watching and were interested and encouraged by what they heard. Although we are talking about treatment and diagnosis in the UK, the repercussions are far wider. Messages of support have been coming in from Norway, Canada, the United States and right across Europe. ME affects people worldwide, and I hope the debate has given them some hope.
More than just raising awareness
“The debate was about more than just raising awareness. Members asked specific questions, and I am glad the Minister said that he would work with the DWP to draw up guidelines for people with ME. We will all watch that with interest, and perhaps some parliamentary questions will go in as a result.
Disappointed about research
“I was also a bit disappointed. The Minister, who is a compassionate person, talked about funding, and I think he said that the Medical Research Council is putting £2.6 million into ME research. Unfortunately, that is not for biomedical research—or little of it is.
“I quickly googled and found that a new research programme is taking place at Bath University, but, once again, it is at the department of psychology. That is where we have the trouble: it is not a psychology department that needs to be doing research, but a medicine or biomedical sciences department.
“Members have spoken passionately on the ME community’s behalf, and once again I thank everyone here this afternoon. I do not see this as the end. The fight for people with ME both here and across the world continues.”
