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And these ‘pennies’ are all the more welcome because they are given in pure friendship, writes Helen Hyland, Fundraising Manager for the ME Association.
Isabel Butler has been a loyal supporter and member of ME Association’s Marketplace team for some years.
Making and selling cards and delightful festive gifts through her online etsy shop and Facebook page.
Some months ago, she joined an online community offering support, encouragement and, most importantly, laughter.
She did a watercolour painting of some of the members (about 18 were in it) and people loved it so much, they paid to cover costs and printing etc. with the leftovers coming as a donation to the ME Association’s Marketplace for ME fundraising page.
The image is now at over 15 locations around the U.K., another is going to Holland and one is off to America.
Isabel writes “I know that it is only a very small amount of money, but it has made people’s lives that little bit brighter and I know every little penny helps!”
What a lovely gesture. Thank you, Isabel, for thinking of the ME Association. And thank you too for sharing the image of all your lovely friends.
Isabel’s cards, paintings and rather special festive groups are available for sale on her etsy shop and Facebook page.
If you are looking for something unique and memorable for a special present, do have a look at her work, and remember that ME Association benefits from proceeds of her sales.
The ME Association
Please help us continue our work
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.
This article is part of Trike Daily’s Sutta Study series, led by Insight meditation teacher Peter Doobinin. The suttas, found in the Pali Canon, comprise the discourses the historical Buddha gave during his 45 years of teaching. Rather than philosophical tracts, the suttas are a map for dharma practice. In this series, we’ll focus on the practical application of the teachings in our day-to-day lives.
In the sutta “About Cunda,” the Buddha gives a profound teaching following the death of the beloved monk Sariputta. Ven. Sariputta and Ven. Moggallana were two of the Buddha’s dearest friends as well as the two chief disciples—the arahants, or fully awakened beings—whom the Buddha first asked to teach the dharma.
Not too long before the Buddha’s own death, both Sariputta and Moggallana passed away. In and of itself, the illness and death of Sariputta, as well Moggallana and the Buddha, offer a potent message: all human beings are subject to sickness, aging, and death.
As the sutta relates, Cunda, Sariputta’s attendant, went to Ven. Ananda to inform him of Sariputta’s death. Ananda was the Buddha’s attendant (and first cousin) and a key member of the community of monks who followed the Buddha during his 45 years teaching the dharma in northern India. This community of monks—the sangha—was a tightly knit group, dedicated to the Buddha, the dharma, and each other. This bond was an important component in the way of life followed by the Buddha and his students—the great blessing of friendship.
So upon learning of the death of his dear friend and comrade in the dharma, Ananda immediately went along with Cunda to see the Buddha and tell him the news.
Ananda related his grief to the Buddha, saying, “It was as if my body were drugged . . . I lost my bearings, things weren’t clear to me.” It is a poignant moment, in which Ananda displays his humanness. Ananda was no different from the rest of us. He felt the pain that we all feel when we experience a great loss.
The Buddha also expressed his pain—the inalienable pain elemental to human life—in the days after Sariputta and Moggallana died. Addressing a gathering of monks, he remarked, “This assembly, O bhikkhus, appears indeed empty to me, now that Sariputta and Moggallana have passed away” (SN 47.14).
In response to Ananda, the Buddha offers a teaching that all of us can take to heart. He begins by asking Ananda, “when he attained total Unbinding [death], did Sariputta take the aggregate of virtue along with him? Did he take the aggregate of concentration . . . discernment . . . release [from suffering] . . . the aggregate of knowledge & vision of release along with him?” No, Ananda responds, he didn’t take these qualities with him. The point the Buddha is making here is crucial. The good qualities that are innate to human beings are ever-present. They are, to use the Pali word, akaliko, part of the ever-present truth. These qualities are timeless; they transcend birth and death.
Our goodness, the Buddha tells Ananda, remains. As human beings our task is to develop our goodness, which is what Sariputta did. So it’s what he left behind. We also leave behind our goodness, to the extent that we develop it and let it shine in the world.
But even while acknowledging the Buddha’s teaching, Ananda continues to lament the loss of his dear friend. “It’s just that he was my instructor & counselor,” he says, “one who exhorted, urged, roused, & encouraged me. He was tireless in teaching the Dhamma [dharma], a help to his companions in the holy life. We miss the nourishment of his Dhamma, the wealth of his Dhamma, his help in the Dhamma.”
The Buddha responds by reminding Ananda of the great truths he has taught his disciples through the years: that each of us is subject to sickness, aging, and death, that each of us will eventually be separated from all that is dear to us. It is the way it is, the Buddha tells Ananda. “What else is there to expect?” the Buddha says. “It’s impossible that one could forbid anything born, existent, fabricated, & subject to disintegration from disintegrating.”
Then the Buddha gives one of his most well-known teachings. He tells Ananda that “you should remain with your self as an island.” Given that Sariputta is gone, given that he himself will soon be gone, given that all human beings are “subject to disintegration,” the Buddha, delivering a vital message to Ananda and his fellow monks, says: “each of you should remain with your self as an island, your self as your refuge, without anything else as a refuge. Remain with the Dhamma as an island, the Dhamma as your refuge, without anything else as a refuge.” Our task, the Buddha says, is to rely on what’s inside us. Our task is to develop our goodness—the qualities of virtue, concentration, discernment. Our task is to find our own release from suffering. The dharma, the teachings that the Buddha has passed on, provide the path by which we pursue these tasks.
The Buddha, however, doesn’t leave it at that. He doesn’t just say, “Be an island unto yourself.” The Buddha’s teachings are never meant to be showcases for rhetorical flourish and verbal brilliance. His teaching are, always, eminently practical. The Buddha, above all, teaches skills. Here, he notes the skills that we need to cultivate in order to be “an island.” The main skill, the Buddha indicates, is the skill of mindfulness. Specifically, right mindfulness. The Buddha culminates this teaching to Ananda by delineating the four foundations of mindfulness, the four primary ways of practicing mindfulness that the dharma student is asked to develop.
In practicing the first foundation of mindfulness, the practitioner “remains focused on the body in and of itself.” All the mindfulnesses that we practice begin by putting the mind on the body—the breath is the anchor point in the body, the place where, first and foremost, we learn to put the mind. In practicing mindfulness of the breath/body, the dharma student develops concentration, the capacity to remain in the present moment, in the body, with a quality of ease and well-being.
The second foundation of mindfulness, in which the dharma student puts his attention on “feelings,” entails being mindful of the sensations in the body—the way the body feels, whether pleasant, unpleasant, or neutral—and the way we’re relating to these feelings.
Practicing the third foundation of mindfulness, the dharma student is mindful of the different states of mind—desire, aversion, delusion, and their myriad subsets—and how we relating to them.
In practicing mindfulness of feelings and states of mind we develop discernment and concentration.
The fourth foundation of mindfulness offers ways of being mindful in which we put our attention on certain mental qualities, such as the four noble truths, in the service of developing discernment.
It’s through cultivating these specific skills of mindfulness, the Buddha teaches, that the dharma student is able to “remain with his self as an island.”
In the end, it’s up to us to find happiness in this life. And, the Buddha tells us, we have an extraordinary capability; we have everything we need to do that. There is a goodness that is ever-present in life. There is a goodness in us. And, within, we have the ability to develop our goodness. If we do this, the Buddha teaches, we will come to know true happiness.
♦
Peter Doobinin’s previous sutta studies take at the Thana Sutta, Yoga Sutta, Nava Sutta, and Lokavipatti Sutta.
The post Sutta Study: About Cunda appeared first on Tricycle: The Buddhist Review.
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We want to fund more research than ever before. And we need your help to do it.
The ME Association has been funding high quality research into M.E. since we began, and we still believe it to be one of our top priorities as a national charity.
It can be a long and slow process, but we believe research offers the best hope.
Progress is being made, the search for answers has been refined and more research than ever before is being published.
We are now better focused on those areas that are believed to offer the best chance for success.
In the last 10 years we have invested over £500,000 in M.E. research, and over £1million in the last 25 years, which we couldn’t have achieved without your support.
But we want to do more to exploit the better understanding we now have about M.E. and then build on any discoveries to help change lives for the better.
The Ramsay Research Fund
Our Ramsay Research Fund (RRF) has brought together researchers from across the UK and from around the world. We are most interested in finding causal mechanisms, diagnostic tests, effective treatments, and ultimately, a cure.
The RRF is a restricted fund which means it is kept separate from our other charitable activities. All the money donated to this fund is used for research – it is not spent on administration or support, or anything other than research.
Recent achievements
We helped establish the ME/CFS Biobank, part of the University College London Biobank at the Royal Free Hospital. This highly regarded and unique resource provides blood samples and clinical data to research projects both here and overseas. We now fund all the basic running costs which amount to around £80,000 each year.
We are also supporting the following researchers:
And also,
Recently completed research projects that we have funded (or co-funded) include:
Our current research funding brings together scientists from Oxford, Spain, Newcastle and London. We’re very pleased with the progress that they are making but we’re eager to do more. Much more.
Our Letter to Santa.
Future direction
The ME Association believe that research into the role of abnormalities involving the immune system, muscle and mitochondria (the powerhouse of the cell) function, and chemical reactions taking place at a cellular level (i.e. metabolomics) are the most important areas of research to concentrate on and pursue at the moment.
We continue to assess new research grant applications to the RRF relating to these research priorities and research centres. Biomedical research like this is expensive, but we firmly believe that it is needed if we are ever to find a cure for M.E.
Centres of Excellence
We are especially encouraged by the work that Dr Karl Morten and colleagues in Oxford are doing. And are equally keen to sustain the work of the ME/CFS Biobank and its aspirations to widen the number and range of its samples.
In the longer term, we would like to see both Oxford and London become ‘Centres of Excellence’ for biomedical research.
Help us do more for research in 2019
If you would like to support our Christmas Appeal, then please:
Visit our JustGiving page to start fundraising or to make an online donation,If you have any questions about the Appeal, then please contact our fundraising manager, Helen Hyland.
If you are a researcher and would like to apply for a grant, please refer to the research section of our website.
We wish you all a happy, safe and comfortable Christmas and New Year.
Thank you.
ME Association Registered Charity Number 801279
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By Beth Petty, Business News Wales, 26 October 2018
Many people may recall a much derided condition called ‘Yuppie Flu’, in the 1980’s, because it seemed to affect young, middle class professionals and had a stigma that led to sufferers being dismissed as malingerers who imagined their symptoms.
“The Unrest film screening event at the Senedd is a pivotal moment for raising awareness of the situation for people with ME/CFS in Wales.”
“We are calling for support and finance for a national training and awareness programme for the NHS in Wales and for the Welsh Government to take on board the current review of ME-CFS provision in Wales and to hold the Health Boards to account given that prior recommendations have not been actioned.”
“We are encouraged, for example, by the fact that the official UK medical advice is under review (NICE guidelines), but Wales needs to demonstrate diagnostic, referral and care pathways for the 16 000 sufferers across Wales.”
Emelyne Burkhard, Chair of MESiG, and also a sufferer.
On-going research, however, has shown that the condition is a serious neurological condition, called Myalgic Encephalomyelitis (ME) or commonly ME / Chronic Fatigue Syndrome (ME/CFS) affects anyone of any age, although about 70% are women. It is the leading cause of long-term school absence amongst children in the UK.
Symptoms include extreme physical and mental fatigue and painful limbs as well as cognitive problems. The condition can also affect memory, concentration and digestion, with 25% of patients housebound or bedbound and the rest struggling with everyday tasks. There is no known cure currently.
ME/CFS research, although poorly funded, strongly suggests that it is a physical condition triggered by a virus which causes both the immune system and the nervous system to malfunction. ME/CFS affects an estimated 16,000 people in Wales, 250,000 people in the UK, and 17 million worldwide. In the UK alone the economic cost is at least £3.3 billion.
“My experience from contact with patients in Wales is that many GPs are still very unsure and uncertain about how to diagnose this illness. They are equally uncertain about how to manage this illness.”
“There are five adult services in Wales but none of them are multidisciplinary physician led which is what these services should be. Overall the situation in Wales is scandalous.”
Dr Charles Shepherd, ME Association, speaking on BBC Eye on Wales (see below).
Shockingly, unlike in England, there is no dedicated medical provision or consultants with specialist knowledge in Wales and seriously lacking to no clinical services. Dr. Charles Shepherd of the national ME Association has described the situation in Wales as “scandalous”.
Consultant and GP awareness is severely lacking and the condition is not on under-graduate medical student courses. The UK medical advice, from NICE, actually aggravates the condition and the NICE guidelines for the illness are currently completely under review, to be re-published in 2020. What do doctors and patients do in the mean time?
We were delighted with the turnout at the Senedd event. Here is the attendee list of AMs that attended as well as…
Posted by ME Support in Glamorgan – MESiG on Sunday, 28 October 2018
Event highlights crisis in Wales
An eye-opening event, attended by over 50 people and attended by 8 AMs, sponsored by Mark Isherwood AM and organised by MESiG (ME Support in Glamorgan) with WAMES (Welsh Association of ME and CFS Support) chairing a patient, carer and GP panel took place, in the Senedd, National Assembly for Wales.
This highlighted the crisis in Wales and the need for action following a brief and moving screening of the award-winning film, Unrest. The film shows sufferers, from around the world, with the camera turned on their lives, carers and families.
The lack of awareness and provision, especially in Wales, was passionately described by one of the panel. Jon Vaughan, carer for his fiancé with ME/CFS said that on diagnosis the support was non-existent with his GP giving only two words of advice: “Google it”.
Note: The Welsh Assembly event took place on Wednesday, 24 October.
BBC Focus on ME/CFS and the Welsh Crisis
BBC Radio Wales ‘Eye on Wales’: “ME/CFS patients in Wales say they’re not getting the diagnosis and treatment they need.”
BBC News Wales: “ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’”
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Margaret, Countess of Mar, has marked ten years of Forward M.E., by meeting with staff and trustees from all the M.E. charities and groups that make up this collaborative.
Lady Mar pictured at a recent visit to the ME/CFS Biobank.
Speaking at the very first Forward M.E. meeting in 2008, Margaret said:
“I have been in the House of Lords for very nearly 33 years. I have taken an active role in some successful campaigns and have watched the progress of other winners. What comes to my mind immediately is that they have always been supported by a united, informed and determined base of people who want to win.”
Since then, we have worked with Lady Mar under the Forward M.E. group banner on a wide range of issues ranging from child protection and medical education through to NHS services and the ever-present need for biomedical research. Most recently we met to highlight the urgent need for a full review of the NICE guideline for M.E./CFS by taking an active role in the scoping and consultation process.
Regular meetings see Lady Mar invite a range of professionals from the health, social care and research fields, as well as ministers, politicians and civil servants from the various government departments that have an effect on M.E. policy, to the House of Lords. This provides important opportunities for us to raise the profile of M.E. and put forward our case for improved medical education, better NHS services and more biomedical research.
The recent meeting with Prof Kamila Hawthorne, Vice Chair of Professional Development at the Royal College of GPs (RCGP), resulted in Forward M.E. hosting a successful workshop attended by over 250 GPs and a busy exhibition stand at the annual RCGP conference in Glasgow earlier this month.
Dr Charles Shepherd, who represents the ME Association on Forward M.E., says: “We are very fortunate to have such an outstanding and conscientious parliamentarian working with M.E. charities and groups at Westminster and chairing Forward M.E.
“On behalf of everyone with M.E, and their carers, I would like to thank the Countess of Mar for everything that she has done over the past ten years, and for organising such a lovely lunch at the House of Lords to celebrate the 10th Birthday of Forward M.E.
“In return for all her hard work, members presented the Countess with a plaque to acknowledge her contribution along with a surprise gift – which was far too big to bring to the House to Lords! – to go in her garden.”
Forward ME Birthday Celebration.
Names to faces:
Front row – left to right
Tanya Harrison (BRAME), Countess of Mar, Dr Nina Muirhead
First row – left to right
Clare Ogden (AfME), Carol Monaghan MP, Janice Kent (ReMEmber), Christine Harrison (BRAME), Sonya Chowdhury (AfME), Sue Waddle (MERUK)
Back row – left to right
Dr Nigel Speight (Tymes Trust and ME Association paediatric medical adviser), Tony Crouch (Tymes Trust), Hannah Clifton (ME Trust), Jonathan Davies (MERUK), Dr Gareth Tuckwell (ME Trust), xx representing Jane Colby (Tymes Trust), Sarah Reed (ME Action), Dr Paul Worthley (ME Trust), Dr William Weir, Bill Kent (ReMEmber), Dr Charles Shepherd (ME Association).
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I love and approve of myself.
Louise Hay taught for years the importance of learning to love yourself.
I know it sounds easy to love yourself, but have you ever looked in a mirror and tried saying “I Love and Approve of Myself”?
If you have, I bet it was hard the first time you did it.
Watch this amazing video from Louise to find out the importance of this simple affirmation.
Keep Tapping!
Nick Ortner
The post I Love and Approve of Myself – Louise Hay appeared first on The Tapping Solution.
The following are Forward ME minutes recently published on their website following a meeting held back in July. They mainly relate to the deliberations the group had over their submission as stakeholders in the NICE guideline review process.
Since this meeting the NICE scope report has been finalised, and stakeholders received replies from NICE with regard to their comments. We published the final report and responses to stakeholders in our blog last week.
Forward ME also discussed the recent CMRC conference, the continuing unsatisfactory roll-out of IAPT services, the debate in Westminster Hall, and the continuing work to improve medial education about ME/CFS.
Forward ME
Notes of meeting held on Tuesday 17 July 2018, 2.00 pm
You can also read these minutes on the Forward ME website
Present:
Countess of Mar (Chairman), Carol Monaghan MP, Bill Kent (reMEmber), Janice Kent (reMEmber), Tony Crouch (25% Group), Christine Harrison (Brame), Dr Charles Shepherd (ME Association), Dr Nina Muirhead.
1. Apologies
Hannah Clifton (ME Trust), Sarah Reed (ME Action), Jane Colby and Anita Williams (TYMES Trust), Sue Waddle and Jonathan Davies (MERUK), Clare Ogden (AFME), Dr Willy Weir and Tanya Harrison (Brame)
2. Minutes of meeting held on 18 May
The minutes were agreed to be a true record.
3. NICE Guideline development
3.1 The Chairman said a number of points had been raised about the NICE scoping document. She had received several suggestions from Clare Ogden and Sue Waddle.
Dr Charles Shepherd had been asked whether we should use the term “encephalomyelitis” or “encephalopathy”. He suggested we go with both names. None of the post mortems so far had shown encephalomyelitis but we could not be dogmatic about it.
3.2 The Chairman referred to lines 23 to 25. We needed to stress the severity of the illness. She then turned to the question of definitions (page 2). Charles Shepherd said there were over 20 different research definitions. The Chairman said we should go with the CDC on this. She also referred to the 40% of people found to have other conditions (e.g. heart failure). We should take out the sentence which included “5% who had no identifiable condition.”
3.3 The Chairman asked whether we should comment on the reference to children. Tony Crouch said we should add “subject to a safeguarding plan”. Carol Monaghan said there should also be something about an education plan. Members commented on the need for such a plan for children who were clearly ill/disabled, instead of pursuing them and their parents for non-attendance at school.
3.4 CBT and GET. The Chairman said she did not like that paragraph and suggested it should be left out altogether. Dr Charles Shepherd said that GET is certainly discredited. We should recommend omitting that sentence and give a reason. Charles referred to current petitions about NICE and CBT/GET. Tony Crouch asked if we could include a passage about people being pressured to do things that could be harmful. The Chairman agreed. Carol Monaghan said we had the opportunity to be bold here, and rather than just omitting the sentence we should make a bold statement about people who have reported damaging effects of such treatments. This was agreed. Charles Shepherd said the CDC had referred to this point.
3.5 Who the Guideline is for. The Chairman suggested the entry at page 3 line 6 should be changed from “may be relevant” to “will be relevant” This was agreed. Access for the severely affected/ disabled had not been mentioned; it should be.
3.6 Key areas that will be covered (item 3.3). The Chairman said we should stress the importance of working together with patients and carers, and the right to refuse treatment. Charles Shepherd said the MEA had added about co-morbidities.
3.7 Key issues and draft questions (item 3.5). Re identification and assessment, Dr Charles Shepherd pointed out that a number of people are diagnosed as having post-viral fatigue syndrome but many of them do not go on to develop ME as such; in those people the fatigue seems to resolve after a few months. He stressed the importance of total rest at first for people diagnosed with ME, CFS or PVFS. Whilst there is not scientific evidence for the benefit of total rest (no-one has done a research study) there is plenty of patient evidence. Janice Kent related how she had been advised by a senior doctor, when she first became ill, to take plenty of rest. Other members agreed.
3.8 Christine Harrison asked whether we would be sticking with the term ME/CFS. The Chairman said “yes”. If we wanted to we could try to get “CFS” removed, but we would probably have to go with ME/CFS. Christine Harrison and Tony Crouch said that at the first NICE workshop there had been a lot of support for removing “CFS”. Janice Kent added that at that first workshop NICE had suggested there might be two arms to the review, one looking into ME the other looking into CFS. If that were to happen she would like to be in the CFS arm as there were a lot of very ill people who had been given a diagnosis of CFS.
3.9 Dr Nina Muirhead said that “CFS” is the internationally recognised term for ME. It should not be confused with “Chronic Fatigue” which can follow a number of illnesses but is not the same thing.
3.10 Outcomes (item 3.6). Dr Charles Shepherd said that there are measurement tools that can be used and there ought to be clinical trials. Janice Kent spoke about three sisters all of whom had ME, all followed the same management regime, and all had different outcomes. Dr Nina Muirhead said Chris Ponting would probably like to meet the family.
The Chairman thanked members for their contributions and said she would work on Forward-MEs response to NICE the following day.
4. Minutes of the meeting of 18 May – matters arising
4.1 International project (items 2 and 3 of last meeting). The Chairman said the letter to WHO had been well received.
4.2 Science Media Centre (item 5.1 of last meeting). The Chairman said she had given up on them. Dr Charles Shepherd asked whether it might be worth inviting Fiona Fox to meet us. The Chairman said she would try.
4.3 Dr Nina Muirhead (item 10 of last meeting). The Chairman expressed our thanks to Nina for all the work she is doing.
4.4 Carol Monaghan MP (item 5.3 of last meeting). The Chairman congratulated Carol on an excellent debate and her speech in Westminster Hall.
4.5 D Tuller and the Lightning Process. The Chairman reported the BMA had said it would not withdraw the LP article in spite of David Tuller’s work. She had written to CMO and the Secretary of State on this subject and had received replies from them expressing some concern. Janice Kent said she had brought the attention of CCGs in Sussex to the apparent referral of children for the Lightning Process. She had now been appointed to a group looking at provision for children in Sussex. She had also contacted a local doctor who was interested in learning about ME/CFS.
4.6 The ME Trust – The Chairman referred to a communication received that morning from Hannah Clifton about a new clinic set up by the Trust in Crowborough. She had also met a physiotherapist who wanted to set up a private centre in Brighton with in-patient beds for people with ME. She was waiting for further information. Bill Kent referred to news of new centres in Suffolk and Northern Ireland and said this sort of initiative should be encouraged by NICE.
5. Research – The CMRC
The Chairman announced she had attended a meeting the previous week and had found it very interesting. Dr Charles Shepherd said that the current focus was on encouraging some body to produce something along the lines of the IOM report. Prof Stephen Holgate had been having discussions with the Academy of Medical Science, but they seemed reluctant to take it on. Also, there had been great interest in the “Dementia Research Platform” which had been set up in Oxford and had attracted several million pounds. CMRC had been in discussions with the Dementia Platform. It is possible something similar could be set up for ME/CFS if the money could be raised.
6. IAPT
The Chairman expressed great dissatisfaction with them. She said there are now people in job centres passing claimants’ details on to IAPT, which is wrong. She also referred to the “yellow card” system; it had been suggested this could be used to report adverse effects of Graded Exercise etc. A minister had indicated that such complaints could be reported via the yellow card, but the MHRA had denied this, saying they would make that clear on the yellow card, and that complaints about therapies should be taken up with the GP or provider of the service.
7. DWP – PIP etc.
7.1 Christine Harrison reported the results relating to PIP assessments with Capita and the Independent Assessment Service (IAS formerly ATOS). She had completed writing the information on ME and CFS for both organisations for their clinical teams and assessors. It had been agreed that, as this work was confidential, the final documents would be sent to the Countess of Mar for her approval.
7.2 Provided PIP assessors read the documents prior to doing an assessment they should have a good understanding of the rrlity of living with ME. However, Christine would need to know where poor or inappropriate PIP assessments had taken place so that she could feed back to IAS and Capita.
Janice Kent spoke about a paralysed man whose PIP was withheld because the PIP authority said he was fit for work. The Chairman stressed that he must appeal.
8. Any other business
8.1 Medical Education. Dr Nina Muirhead said the Medical Schools Council (MSC) supported her call for a survey. She would set this up in Survey Monkey or similar. The MSC had suggested she start off in a university with a view to nationwide roll-out. She had discussed with Cardiff University and had made great progress. This included fitting the topic into the main curriculum for 2018-19, the possibility of an e-learning module as part of a BSc in Medical Education, and allowing year 3 and year 4 students to choose a topic in ME to research. The last item depends upon a group wanting to pitch ME/CFS as a subject, but she was sure a number would be interested. The university is receptive of the idea of individual students researching a particular aspect of ME/CFS, such as the patient pathway/service evaluation.
8.2 Nina went on to explain that she is a NICE stakeholder. She was thinking of suggesting that NICE include an “education” member on the committee. Teaching doctors to recognise the disease with clinical confidence would save so much money and time (she had seen 13 different doctors before she received an accurate diagnosis). Dr Charles Shepherd urged her to do this; he had already applied to join the committee as a medical professional. Nina added that she was thinking of applying to join as a lay member; the Chairman suggested she do so as a medical education person.
8.3 Nina also read out a letter she had received from Dr Jonathan Leech of the RCGP. In it he said he had read the transcript of the Westminster Hall debate and was very concerned about the treatment of ME/CFS patients reported by MPs. He had noted her concern about the College’s e-learning module – he agrees it’s awful – and he says they will review the module in the light of the new NICE Guideline. Finally she reported that BBC Radio Wales have accepted them for one of their autumn programmes. The 30 minute broadcast will include 4 to 5 guests including patients, medical research, and a charity.
8.4 RCGP Conference. Dr Charles Shepherd explained that Forward-ME had met Prof Kamila Hawthorne of the RCGP who had invited us to their conference in Glasgow in October. We will be holding a workshop there. The Chairman said she was arranging for a triptych for posters (about A4 size) with leaflets on the table below. It will measure 2 metres by 2 metres. Could anyone arrange its transport? Charles Shepherd said the MEA could arrange for it to be transported from Buckingham with their courier. The Chairman said she could get it to Buckingham. Charles Shepherd called for volunteers willing to man the stand. He added that leaflets should be restricted to one per charity. Carol Monaghan said leaflets etc could be sent to her constituency office in Glasgow. Charles said he would give a presentation of 10 to 15 minutes at the conference Dr Gregor Purdie and Dr Nigel Speight (children) would do 10 minutes each.
8.5 Westminster Hall debate. Carol Monaghan gave a quick update. There were 30 participants which is good. She has asked them to participate again in a debate in the main chamber of the House. The main motion will be about biomedical treatment and biomedical research funding. She hoped a petition could be organised too. A petition with 10,000 signatures must be answered. If there are 100,000 signatures it must be debated, and a vote can then be insisted upon.
There being no further business the meeting ended at 3.20 pm.
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Our Fundraising Manager, Helen Hyland, is rushed off her feet – and needs help.
Helen has grown the level of fundraising events for the ME Association to unprecedented levels and a large part of her work involves supporting our fundraisers.
That means getting covering fundraising events, challenges, adventures, and escapades in the local press, and perhaps further afield.
We are looking for someone who could use their skills to help fundraisers present their stories in a newsworthy way and approach the local press on their behalf.
The work entails:
Interviewing fundraisers with sensitivity, tact and empathyYou will need the use of a computer and be able to use Word and Excel and social media such as Facebook.
Expenses will be paid. Most of the work involved will be home based. We anticipate the work will require about 10 hours a week but this can vary according to the fundraising events at the time.
Working as a volunteer for the ME Association is hugely rewarding. We think you will enjoy it.
In the first instance, please write to Helen at helen.hyland@meassociation.org.uk and tell us about yourself.
We look forward to hearing from you.
Image credit: 123RF Stock Photo/Shannon Fagan
