The Members of the East Lothian ME Self Help group (ELMESH) would love to be able to take part in the Lifestyle Management course at the Thistle Foundation but can’t make the journey into Edinburgh. Could you help them raise funds to pay for a Thistle sponsored Lifestyle Management programme to be run locally? The course is free to participants but costs £4-5,000 to mount.

Dr Marilyn McNeill, the group’s facilitator, is kick starting a series of fundraising events by donating £1,000 in honour of her sister’s memory. Marilyn benefited from attending the Thistle but unfortunately her sister couldn’t, as it was too difficult for her to travel.

The first event, planned for 19th May, is based at Athelstaneford Village Hall. It’s a series of sponsored walks for most abilities. Some people may only be able to walk a few paces and be sponsored by friends/family; others can attempt the longer routes of Cogtail Burn and back or any part of the walk over the Garletons to nearly Haddington and back.

The routes will be supervised by trained walk leaders provided by the Thistle.

At the Village Hall teas and home baking will be on sale. Live music will include the Port Seton Pipe Band at 2pm (sharp), the North Berwick singers and an instrumental band. A Children’s Corner will be in the Hall or outside on the Green, if it’s sunny. Can you or someone you know, help ELMESH raise these much needed funds by undertaking a walk, or perhaps sponsor another walker taking part?

Volunteers will also be needed to help out with the refreshments and donations of home baking would be welcome.

A raffle will also be held, with a prize of 2 tickets for the Open Golf at Muirfield in July.

If you could help or want to learn more about the event, please email moc.sulp.merdsnawornull@nyliram.

Download a flyer about the ELMESH Sponsored Walk.

The post ELMESH ME-CFS Awareness Day Sponsored Walk – Sunday 19th May 2013 appeared first on Edinburgh M.E. Self help Group.

Introduction

edmesh extended another warm welcome to Dr Vance Spence, (Chairman) and Dr Neil Abbot (Operations Director), from the Perth based charity, ME Research UK (MERUK). Their return to the Lammermuir Hall, St Cuthbert’s Church, Edinburgh on 15th October 2011, was much anticipated. After a few words, Dr. Spence  addressed the meeting of around 70 people.

He began his talk with a brief outline of how the charity evolved, its aims, the challenges they face and the key problems in ME research today. He explained that MERUK’s mission is to “Energise ME Research” by funding high calibre research into the causes of ME, which will lead to effective treatment and ultimately, discovery of a cure.

The charity, which relies totally on donations, also wants to raise awareness of the need for world class research, so that the information gained from these studies can be circulated not just to other scientists but to other health professionals giving them a better understanding of this illness. MERUK also acts in an advisory role to Government agencies and public bodies both in Scotland and the UK.

Any research is expensive by its nature and there is little funding for biomedical research. It costs around £300,000 to run a medium sized clinical trial. MERUK’s intention is to support new biomedical or clinical studies in established research institutions. This fundamental research lays the groundwork for bigger trials or studies. Once a study is finished the research group aims to submit their findings for “peer review” by a group of scientists or doctors (who do not have an ME background) and get their work published in a journal with the highest possible “impact factor”. If accepted by a high ranking journal such as British Medical Journal or Lancet, more people will read about the work and it’s this that drives forward the understanding of ME. It would be hoped that this might stimulate more academic interest than there has been up till now. The mainstream media are poor at reporting on ME related topics. As there is a lack of information, public perception of the illness is poor.

Confusion

There is still NO agreement on nomenclature. Is it ME, CFS, ME-CFS or CFS-ME.? There is NO specific diagnostic test for ME and NO agreement on which set of criteria should be used for diagnosis. Myalgic encephalomyelitis (ME) is NOT a diagnosis recognised by doctors or scientists neither is it taught in medical schools. Most doctors use the term Chronic Fatigue Syndrome (CFS) as they see fatigue as the main symptom.

The most widely used set of diagnostic criteria used is the US Centre for Disease Control (CDC) -1994 (Fukuda). The principal diagnostic symptom being fatigue along with 4 out 8 other symptoms. Dr Melvin Ramsay was one of the first to describe the symptoms of ME after the Royal Free Hospital outbreak in 1955 and these were reported around the same time in The Lancet by Dr Acheson: muscle fatigue after exercise, neurological disturbance, cardiac problems, variability of symptoms and chronicity. ME has been shown to occur in sporadic and epidemic forms. Between 1934 and 1990, there have been roughly 63 documented epidemics, 16 in the UK.

There is still a wide spread misdiagnosis of ME. In 2008-09, 260 patients diagnosed by a GP, were referred to The Newcastle NHS Chronic Fatigue Syndrome Service, a unit that specialises in fatigue-related illnesses. It found that 40% of these referrals had been given the wrong diagnosis: 47% had other chronic disease, 20% sleep disorder, 15% psychological disorder, 13 % idiopathic fatigue, 4% cardiovascular, 1% other. As Vance pointed out, fatigue is a part of every illness. Most illnesses with fatigue as a symptom can be medically explained, and in fact 2 – 4% of the population can be classed as having Medically Unexplained Fatigue. This doesn’t equate to having ME. There is a clear need for a specialised ME centre to be set up which would allow for proper diagnosis and treatment. Establishing such a centre would allow researchers access to a valuable and well-defined resource.

Once the researchers have established that their study patients have ME it’s then possible to divide them into subgroups depending on their symptoms. This classification on the basis of symptoms is called “phenotyping”. Such classification of patient types, particularly in ME, is being undertaken in Newcastle with some success. Vance continued his talk by giving a roundup of some research projects that MERUK have funded.

On Going ME Research; Muscle, Brain and Autonomic Nervous System (ANS)

HEART

“Impaired Cardiac Function in CFS Measured Using Magnetic Resonance Cardiac Tagging”
Hollingsworth KG, Hodgson T, MacGowan GA, Blamire AM, Newton JL; University of Newcastle

Some previous research has found that ME patients have a low circulating blood volume. And because of this, some doctors in the USA give their ME patients an intravenous infusion of saline, three times a week. It increases the amount of fluid circulating in the body, which seems to help alleviate symptoms. Vance recalled a report that one woman had had good results with this treatment, though one downside could be problems with the regulation of sodium and potassium levels.

Recently, Prof Julia Newton’s group in Newcastle reported finding that ME patients had substantially reduced left ventricular mass (reduced by 23%) and reduced cardiac output (25%) compared with healthy people, results which are in accord with previous findings.

“Impaired Cardiovascular Response to Standing in CFS patients”
Hollingsworth KG, Jones DE, Taylor R, Blamire AM, Newton JL : University of Newcastle.

As Prof Newton had already shown in previous Magnetic Resonance studies, some ME patients had impairment in their skeletal muscles ability to produce energy at a cellular level. This study was able to demonstrate that cardiac muscle has a similar problem. They showed that the impairment is associated with an increase in cardiac contractility i.e. the hearts of ME patients have to work harder, something which might explain the more severe symptoms patients have on standing. This study allows for a way to define a bioenergetics phenotype in ME patients.

MUSCLE

“Loss of Capacity to Recover from Acidosis on Repeat Exercise in CFS Patients”
Jones D, Hollingsworth K,. Jakovljevic D, Fattakhova G, Pairman J, Blamire A, Trenell M, Newton JL; University of Newcastle.

The Newcastle team wanted to explore the possible causes of these reported difficulties. The study group performed 3 bouts of exercises and
were assessed by Magnetic Resonance (MR) spectroscopy along with a cardiovascular fitness test, to determine at what point their muscles switched from producing energy with oxygen, to producing energy without it i.e anaerobic threshold. A consequence of energy made this way is muscles feel sore and blood becomes acidic.

Interestingly, the results showed that the ME patients fell in to 2 groups, one group who exercised to their capacity and the other group who under-exercised despite thinking they had reached their maximum exercise capacity. This outcome is unique in the research group’s experience. No comparable “exercise avoiding” group is seen in Primary Biliary Cirrhosis (PBC) patients, who have a similar level of muscle fatigue. This suggests that there’s something specific about a sub group of ME patients. They concluded that using MR-directed stratification would be a useful tool in future studies of exercise and exercise therapy.

All the ME patients showed that they had reduced anaerobic threshold, heart rate, and reduced capacity to transport and use oxygen during exercise compared to the control group. Some of this group also showed that it took much longer to get rid of the build up of acid in their muscles and that it took four times longer for pH levels to return to normal.

Autonomic Nervous System

“The Effects of Oral Vitamin D Supplementation on Cardiovascular Disease Risk in Patients with ME-CFS”
Dr Faisel Khan & Prof Jill Belch, Dr Gwen Kennedy & Dr Miles Witham. The University of Dundee

Dr Khan and colleagues are investigating the theory that large doses of Vitamin D improves cardiovascular function in ME patients. Building on previous work that has been done on arterial stiffness (arterial stiffness is one indicator of damage to large blood vessels) – which is an indicator of early cardiovascular disease. They have found some evidence that there’s a link between low levels of Vitamin D and increased arterial stiffness. They are currently carrying out a clinical trial to see if giving large doses of Vitamin D would lead to improvement in cardiovascular functions and improve symptoms in ME patients The trial participants are given a dose of 100,000 unit of cholecalciferol or matching placebo (dummy oil) on 3 occasions. If there are improvements in cardiovascular function then this could prove to be a relatively simple, cheap and effective way of reducing the risk of cardiovascular disease in this group of patients.

ME Research UK has also funded research on young people with ME-CFS……

“Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood”
Dr Gwen Kennedy, Dr Christine Underwood, Prof Jill Belch, University of Dundee

Little is known about the experience of children who have ME-CFS.despite ongoing attempts to improve the diagnosis and management of the illness. In one study, the group showed quality of life of children with ME-CFS, to be significantly impaired compared to their healthy peer group, and with children affected by other chronic illnesses e.g. type 1 diabetes, asthma. The study also showed that there was a close correlation between the child and parent’s perception of the illness.

In another study, Dr Kennedy measured levels of isoprostanes and antioxidant plasma levels of Vitamin C and E in children’s blood samples. She showed that the ME-CFS paediatric group had increased oxidative stress compared with healthy children and there was also an increased in white blood cell apoptosis (early cell death), showing that neutrophils and lymphocytes were less viable than compared to healthy children.

These biomedical anomalies seen in child ME – increased oxidative stress and increased white blood cell apoptosis – also are seen in adults with clinically diagnosed ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the normal range in these paediatric patients.

The researchers believe that ME patients have an underlying, detectable abnormality that points towards an activated inflammatory response which is consistent with a reactivating or persistent viral infection.

XMRV UPDATE

In autumn 2009, the prestigious scientific journal Science published findings from the University of Nevada, USA, suggesting a link between Xenotropic Murine Leukaemia virus-related virus (XMRV) and ME. Remarkably, the retrovirus could be detected in the peripheral blood mononuclear cells of 67% of the patients but in only 3.7% of control subjects. The researchers also reported data suggesting that infected white blood cells could pass the virus on to uninfected cells – an appealing suggestion at first glance, since it could account for some of the known neurological and immune features of the chronic illness.

Because of uncertainty whether the blood borne virus caused ME, several governments including the UK banned blood donations from anyone who had or has ME.

However, since then 17 distinct studies have been published by other researchers across the world keen to test their own populations of patients, but they have not been able to find significant levels of the retrovirus in their patient groups. There have been some suggestions that laboratory contamination might underlie XMRV-positive findings, but at the moment the jury is still out, though the future looks bleak for the notion that XMRV-infection is the cause of ME around the world.

In September 2011 it was reported that Dr Judy Mikovits, who published the first report, had now left the Whittemore Peterson Institute (WPI) “by mutual agreement”.

MERUK funded a joint study with Prof Blomberg, a leading Swedish Virologist, to try and replicate the WPI study. However, his team could not find XMRV or related viruses in the blood samples of ME patients in Sweden.

Vance posed the question as to whether these events damaged public/ scientific perception of ME. He concluded that he didn’t think so, far from being damaging, it had in fact kindled more interest and it has shown the scientists how sick sufferers are and the wide range of symptoms affecting multiple organs in the body.

UK ME-CFS Biobank

In a joint venture, MERUK, Action for ME, The ME Association and an anonymous donor are sponsoring the establishment of a Biobank at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London. This facility will collect blood samples from people who are already on the ME-CFS Disease Register and healthy volunteers. This cohort, complete with biological and samples and clinical data, provides the groundwork for other research groups to take forward and investigate the many unanswered questions about ME.

Funding for this work will only be for 18 months to 2 years. It’s hoped that when the time comes the MRC or a similar body will take over the cost of running the Biobank.

RECENT NEW PROJECTS

ME Research UK has undertaken three new projects:

• a) Comparison of various criteria for ME and ME/CFS: Focus on Neurocognitive Performance, Physical Recovery, Physical Activity and Autonomic Manifestations (Belgium)
• b) Search for the aetiology of ME/CFS patients: Development of diagnostic microbiological biomarkers (Sweden)
• c) Quantitative and objective determination of the nature and extent of the visual symptoms experienced by ME/CFS patients (UK)

Round up

Vance believes that only biomedical research is the key to finding a cause for ME. He reiterated that there is an overwhelming need for a research centre to be set up in this country. MERUK has been funding research since 2000. To date they have invested £750,000 in biomedical research. This has resulted in 37 published scientific papers, with 3 more in the pipeline. All of this has been achieved through the generosity of charitable donations. There is no Government or central funding, – though the recent invitation by the MRC for researchers to compete for £1.5 million worth of funding is hopeful and to continue with the expensive business of biomedical research, MERUK needs the support of patients and their families and friends.

Q&A

After a break for refreshments, it was the audience’s chance to quiz Vance, on a number of far- ranging ME topics, in the excellent Q&A session that followed.

A question came from the back of the room asking if the work being done in the Pacific Labs, USA could have been done here. Vance reckoned that it could have but cost was the prohibiting factor – gene work is a very expensive business. He thought that the work referred to, is being done by Dr Alan Light, on gene transcription before and after exercise, and guesses that it would cost in the region of $1 million dollars. He added that it was probably becoming less expensive now as the price of consumables gets cheaper. He also mentioned that this work was related to that of Dr Jonathan Kerr, who was able to genetically subgroup ME-CFS patients.

Then followed another intriguing question as to whether Vance thought there was a link between the Royal Free Hospital Outbreak in 1955 and Sick Building Syndrome (SBS)? Vance thought there was no connection. His reasoning was that SBS is a modern phenomenon which came to the fore in the 1990s. Numbers affected were small. In the 1955 outbreak of ME at the Royal Free Hospital almost 300 members of staff were affected. Most recovered, and it was only a small group who did not. Vance recalled that when he worked at Ninewells Hospital, Dundee, 6 members of staff were taken ill at the same time. 3 recovered, 3 became chronically ill – but he couldn’t ascribe this to SBS. Earlier in the talk he commented on the sporadic and endemic nature of ME-CFS occurrences, which is not the case in SBS.

The next question put to Vance asked if there was any point in taking Vitamin D supplements. Vance replied that the Vitamin D study at Ninewells Hospital, Dundee was looking at cardiovascular parameters. Vitamin D levels were found in a pilot study to be linked with increases in arterial stiffness, risking further cardiovascular illness. He continued to explain that Vitamin D is multifunctional in that it plays a role in many other body systems. Low levels may also affect other ways the body works. The level of Vitamin D taken in the study is much greater than over the counter supplements. A normal supplemental dose is 500 UI compared to 100,000 IU study dose, albeit that the higher dose is slow-release over time.

He then moved on to discuss what the present state of play was in setting up an ME-CFS clinic in Scotland. This is an ongoing issue since Vance “crossed swords” with Dr Mac Armstrong, the ex-CMO, back in 2002. Vance came up with a plan, setting out what was needed. It didn’t have to be an institution; a small room would suffice. Ancillary services such as physios and Occupational Therapists are already in place so ME patients could be easily slotted in. Unfortunately, no funding was attached to the plan, so it went nowhere. As ME patients have multiple referrals to various medical services during the course of their illness, it would make economic sense, for them to be seen at a specialist clinic. But the NHS Health Boards would have had to redirect money for a service, and none would be willing to do so. In 2010, Health Care Needs Assessment was published with 26 recommendations. As yet, there has been no progress in putting these recommendations into practice. Vance thought that the Cross Party Group (CPG) on ME-CFS should focus its efforts on this and push for a ME clinical service to be set up. Another benefit of this service would allow patients to obtain supporting documentation of their illness for benefit claims and pension applications as there would be a recognised expertise to back up their claims. Prof Newton already offers this for patients referred to her clinic in Newcastle.

One lady wondered if there was any other illness that was marginalised as much as ME was. Vance gave the examples of Fibromyalgia or Irritable Bowel Syndrome (IBS) where people aren’t really classified as physically ill with a recognised condition. They’re seen as “functional illnesses” -something’s wrong but there’s no reason for it. Stomach ulcers were viewed that way until the bacterium Helicobacter pylori was discovered, and a cure soon followed. People with Multiple Sclerosis (MS) took a long time to be believed but thanks to improved MR, that all changed. So the hope is that soon there will be a diagnostic test for ME-CFS and the perceptions towards this illness will change.

Someone asked if Scottish patients will be able to use the Biobank? Simple answer is yes as it’s a UK wide facility, and there are plans behind the scenes to have a system through which people can volunteer for the Biobank. Initially patients will be assessed on the Fukuda and Canadian criteria, but all will need to be clinically assessed and this might complicate recruitment initially. This adds weight to having a centre like Newcastle. If finance had been available, a clinic could have been set up in Dundee run by Prof Belch. She had already seen around 400 patients but she could not see anymore. When Vance was the Chairman of Fife ME Steering Group, he along with the other Trustees wrote 438 letters to Fife Health Board asking for support for a clinic. The correspondence was ignored. They did however manage to set up a minimal service of a specialist ME-CFS nurse who remains the only one in Scotland.

The last question put to Vance wondered if the reason scientists were withdrawing from ME research was down to hype? He replied that this could be the case and the furore surrounding the hate mail received by Dr Crawley has not helped. It is more likely that the lack of funding is to blame; as neurological illnesses are poorly funded, there is little interest or incentive for research scientists into this area. Cancer Research UK is way ahead with an annual income of around £530 million. This far outstrips funding into cardiovascular illness which causes more deaths.

As usual, there were many more questions than there was time and reluctantly, the meeting had to come to a close.

Note: Since this talk there have been some changes in the ME world. The Science paper on XMRV was retracted, and XMRV has been largely discredited as a cause of ME. The Scottish Cross Party Group on ME disbanded in 2012.  Also, A Lothian ME-CFS service has been set up at the Astley Ainslie Hospital in Edinburgh.

You can read about the latest ME Research at MERUK’s page here: http://www.meresearch.org.uk/research/studies/index.html

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Date: Wednesday 5th June

Time: 2.30pm

Venue: Bisque Bar and Brasserie, 69 Bruntsfield Place, Edinburgh

Map:

We meet in the brasserie, which is a part of the Bruntsfield Hotel. It also has access to a lovely outdoor garden. There is table service so no queuing with trays and no struggling not to spill anything in getting to your seat. Prices are reasonable with a good range of refreshments and snacks.

There is ample parking (Pay & Display) along Bruntsfield Place on the opposite side of the road and also some specific blue badge spaces.

The nearest bus stops are: From town - at the bottom of Bruntsfield Links (just after BP garage/Whitehouse Loan) which involves a short walk uphill and crossing the road OR the next stop is on the corner of Forbes Road (outside Nippers) – a slightly further walk but flat then downhill and easier access to cross the road at a Pelican crossing. Into town – just after Costa Coffee outside Bay Tree Company/Hallibut & Herring with a short downhill walk on the same side of the road. Lothian Buses: 11, 15, 16 and 23.

The cafe meetings are informal get-togethers for company, conversation, support, entertainment, information sharing, and refreshment. Please look out for the Newsletter on our table, or ask the staff if you can’t see us. All welcome to join us – you don’t have to be a member.

If you haven’t been along to the cafe meetings before, and would like some moral support to attend, contact us on ku.gro.hsemdenull@ofni or 0845 625 2025 and we will arrange for a committee member to meet up with you first.

The post edmesh Cafe meeting – Wednesday 5th June appeared first on Edinburgh M.E. Self help Group.

Please note: This walk was originally scheduled for 10th June. The new date is Thursday 20th June.

edmesh has booked walking tour with Greenyonder Tours for 20th June at 11am.

This will be tailored for us – so not too much standing and the walking is gentle and downhill. You will hear about grand gardens of the past and be able to take a breather in a beautiful space.

Date: Thursday 20 June 2013
Time: 11am
Where : Meet outside John Knox House (Scottish Storytelling Centre), 43 High Street
Our guide Jean will be there holding a sign.
Details: Tour lasts 1 hour and 40 minutes.
Cost: £3 to edmesh members and £5 to non members. Normal cost of this tour is at least £7.

The walk finishes at the Scottish Parliament and we can then lunch in the Parliament Cafe. This is optional and not included in the above price.

To book a space contact Jeff at ku.gro.hsemdenull@laicos.

Please make cheques payable to edmesh and send  to Jeff (address on the inside back cover of our newsletter).

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 Are you interested in books? Like free events? Can you get along to the Royal College of Surgeons on Thursday the 2^nd May between 6-8 pm? Then this might interest you.

The Anatomy Museum is the back drop to The “Writing Medicine in the City of Literature” event.

3 Edinburgh based authors will read from their work and share with the audience the story behind the story of their medically inspired books.

Nasim Marie Jafry writes about the neuroimmune illness ME, through the eyes of the central character Helen.  Nasim has had ME since the 1980ss and blends in her personal familiarity with the illness along with a healthy dose of fiction, in her best- selling novel, “The State of Me”.  This funny but sad story looks at how Helen faces the isolation and chaos of her illness and explores the impact on her relationship with family and friends. Nasim blogs at http://velo-gubbed-legs.blogspot.co.uk/.

Sharing the platform is Alison Summers, who writes a fictional account of how the characters in her book struggle with the rare condition Pick’s Disease. She was a witness to her sister’s fight against this form of early onset dementia.

Tracey S. Rosenberg’s poetry about cancer has been published widely. It sets out to examine the effect of this devastating illness not just on the physical but to the far reaching effects on personal relationships

The city has long since been recognised as a world leader in many areas including literature and medicine. This event which is part of a series from the Dissecting Edinburgh project links together these 2 distinctive areas. Through a series of public readings and lectures, it examines how Scottish writing is shaped by the legacy of the medical profession. Along with weekly tours of Surgeon’s Hall museum, Dissecting Edinburgh opens up new ideas on the history of medicine as it’s proverbially being written.

The “Writing Medicine in the City of Literature” event at The Surgeon’s Hall Anatomy Museum, Edinburgh. Thursday May 2^nd, 6-8pm. Tickets are free but places are limited.

To get tickets, visit http://www.eventbrite.co.uk/event/5597087038/

Event details: https://sites.google.com/site/dissectingedinburgh/events/writing-medicine

The post Free Edinburgh Literature event featuring local author with ME – 2nd May 2013 appeared first on Edinburgh M.E. Self help Group.

Emily Ackerman with edmesh convenor Anne Friston

Committee Room 3 at the Scottish Parliament was buzzing on the evening of the 12^th March, as the various member organisations of the Neurological Alliance of Scotland came together for Brain Awareness Week.

The aim of the “We are the Missing Million” event was to raise awareness of the care and support needed by those living with a neurological condition and to draw attention to the problems in accessing welfare benefits, social care provision as well as NHS services. MSPs attending the evening were asked to sign a pledge to “Recognise the Missing Million”.

14 different neurological organisations were asked to nominate one of their members to be featured on their poster under the strapline “I’m one of the Missing Millions”.

Dr. Emily Ackerman came forward to represent edmesh and ME-CFS. She sent in a stunning, smiley photo of herself to be featured on our poster alongside a few personal details and her condition. She was accompanied by her husband Gordon, edmesh Convenor Anne Friston and Joan Kerr. Action for ME’s Scottish Co-ordinator and edmesh member, Kat Allen, completed this formidable line up.

Emily had a varied career before she became ill, 22 years ago. She and her husband are very clued up on their ME facts and were able to put forward in a very detailed manner on what their life was like and what it’s like now and what changes they would like implemented.

The drop in, market style layout of the room, was to allow MSPs to move freely between the different groups to learn firsthand from the poster person about their condition and how it affected their life.

Of the 16 Cross Party MSPs that mingled with us, 4 came to the edmesh stand. They were Malcolm Chisholm, Jackie Baillie, Alex Fergusson and Mary Fee. It was encouraging to see Mary, as she has a personal interest in ME-CFS and is acutely aware of its affects not just on the person but on all those around them.

Mary had sponsored the event and during her opening remarks, she pointed out that living with a neurological illness was hard enough but too many have to live with being misunderstood, stigmatised or minimised. She quoted a figure of 1 million people in Scotland living with MS, Parkinson’s, Epilepsy, Huntingdon’s, MND, Acquired brain injury and yes, ME-CFS. A neurological nightmare.  She spoke of the concerns about changes to the welfare benefits system and how it increases the chance of those requiring to claim ESA, DLA, IB or Housing Benefits not being able to access these vital benefits, leading to financial hardship and social isolation.

Dr Jane Hopton, who is the lead on NHS Lothian’s Neurological Improvement Plan; Andy Wynd, Chair of the National Neurological Advisory Group (NNAG) and Craig Stockton, Chair of the Neurological Alliance of Scotland also spent time talking to us.

The atmosphere around the room was relaxed and there seemed to be many light hearted moments being shared amongst the serious business of putting forward the needs of 1 million people.

The MSPs were asked to sign a pledge to show that they “Recognised the Missing Million” and to undertake to write to their Health Boards and local authorities asking them to consider neurological conditions in their plans.

The evening ended with a group photo of all the brave souls who represented either their illnesses or their organisation but most importantly of all represented themselves in an effective and dignified manner.

Read the Neurological Alliance article on Brain Awareness Week 2013.

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The CPG on M.E. started in 2000 with the support of many MSPs and enthusiasm to bring about change in the understanding of M.E. and for the lives of people affected by it.  It ended in 2012 with a breakdown in the support of the remaining MSPs, following a disagreement amongst the 6 members of the working group for a Centre of Excellence / Lead Clinician, a controversial vote and the subsequent actions of a number of CPG members.

What was this dispute about?

There was lack of consensus on the question of which patients would be included in a Centre of Excellence: strictly defined M.E. patients only or patients who met the criteria for ME-CFS, the term used in the Needs Assessment and Scottish Good Practice Statement for GPs.

On 29^th August, Mary Fee, MSP, convenor of the CPG, attended a working group meeting having been informed of the disagreement.  Each side were to bring firm evidence in support of their argument. The ME-only group based theirs around definition and the problems associated with compromise, arguing that:

• Only those who fitted the WHO Classification should benefit from the services of any Centre of Excellence as M.E. and CFS are unrelated and must be treated separately.
• If M.E were to be mixed in with a “bucketful of illnesses” there would be inequality of care and resources would be wasted over a broad range of conditions making progress impossible.
• A compromise would mean the introduction of fatigue clinics.

The 3 members who recommended that a Centre of Excellence should encompass both conditions brought 37 pages of references taken from a range of published reports, reports of parliamentary committee meetings and minutes of CPG meetings that supported the use of M.E. and CFS as equivalent terms in practice, including:

• The complete definition of the classification WHO ICD10 93.3 in which Post Viral Fatigue Syndrome (PVFS) is the main term with benign M.E subordinate to it.
• CFS is the term used by international researchers and the medical profession.
• UK and Scottish governments acknowledge M.E. and CFS as interchangeable terms.

With no resolution, the convenor suggested to the three members who were insisting on an ME-only Centre of Excellence that, if they thought they had the support of the CPG membership, they could put their proposal to a vote – cautioning that MSPs would find it difficult to continue to support the CPG if it was not prepared to acknowledge the term – ‘ME-CFS’ – that the government recognised.  This did not imply that the CPG would cease to raise awareness of the specific nature and impact of M.E.

In spite of this proviso the three members supported a vote and the representative of the Tymes Trust on the working group drew up a proposal which was circulated via the secretariat to the CPG membership.  This one page proposal put forward a “choice” for a Centre of Excellence based on:

1. “WHO ICD10 G93.3 neurological disease M.E”,  OR
2. “Umbrella term ME-CFS to include a spectrum of fatiguing conditions”.

The voting options were preceded by a series of statements setting out reasons why CPG members should vote for option 1, while no balancing counter-statements were provided in support of option 2.  The inclusion of “a spectrum of fatiguing conditions” in option 2 was controversial.  There could be speculation as to whether the second option was formulated as a result of a misunderstanding or whether it was calculated to bias the vote.  What was certain was that it did not represent the argument put forward by the other three members of the working group who agreed with Mary Fee, MSP, that a pragmatic approach was desirable to keep open a dialogue with the health department and medical bodies.

What were the arguments for option 1?

The first option stemmed from the view that M.E. was being damaged or undermined  by the terms CFS or ME-CFS; that the diagnostic criteria for CFS lacked precision and cast too wide a net to be useful; and that there were problems caused by confusing CFS with chronic fatigue, leading to misunderstanding and improper diagnosis of the illness.

However, as Dr Neil Abbot of ME Research UK – commented he was astonished at both the voting options on offer, neither of which represented a valid way forward – pointed out in his subsequent comments, the WHO ICD10 G93.3 is a classification. It has its uses for categorising diseases, but is not a diagnostic tool in itself, and an acceptable working definition of M.E. would still need to be specified for everyday use in a Centre of Excellence.  He also noted that few if any clinicians or scientists today apply or even recognise the older definitions of M.E., and the practical usefulness of the very new International Consensus Criteria’s (ICC) for M.E. remains to be established. None could form the basis of a Centre of Excellence, at least at the current stage of knowledge; however, a Centre of Excellence for ME/CFS could certainly examine whether different definitions of CFS and M.E. do, in fact, define clinically different groups.

A few days after CPG members had received the voting options, the 25 % ME Group circulated a paper in support of the first option which consisted of a collection of quotations from various sources to back up the term ‘M.E.’ and their reasons for rejecting ‘CFS’ as a diagnostic term.  From the statements circulated to the CPG in support of option 1, the evidence suggests that debates about terminology underpinned this option rather than scientific and medical rationales for a Centre of Excellence to resolve these debates.

What about option 2?

Dr Abbot’s comment was this: “I doubt if anyone – on the CPG or anywhere else – would actually vote for this option (certainly not me), since this is not what a Centre of Excellence for ME/CFS would be looking at – it’s a red herring.”

The three other sub group members submitted a response to the voting proposal making clear that the second option did not reflect the views put forward to the working group.  This paper looked at evidence which supports the use of M.E. and CFS as interchangeable or linked conditions: the WHO classification; their pragmatic use as synonyms by the main M.E. charities and UK and Scottish governments; and the acknowledgement that biomedical researchers, both internationally and in the UK, are considered to be studying a similar body of patients.  It was noted that the use of CFS by some UK psychiatrists to mean a psychiatric disorder is at odds with the WHO classification.

In a Scottish context, the petition of the CPG on M.E. (2001), the Report of the Short Life Working Group (2002), the Health Care Needs Assessment (2010) and the Scottish Good Practice Statement (2010) all indicate that M.E. and CFS are understood as interchangeable terms in practice which acknowledge a range of severity and the possibility of sub-types.  Many medical professionals, researchers and patients agree that a composite term is unsatisfactory but there is little point in arguing over labels while scientific research is trying to unravel what underlies M.E. and CFS.  What matters is the understanding that ME/CFS/PVFS are classified as neurological conditions with overlapping symptoms and a spectrum of severity.

The paper also commented on long standing problems within the CPG which were being obscured by the focus on definition and terminology.

Firstly, inability to engage with a political process. This was evident from an ongoing lack of understanding from some members of what a CPG is for; of how to work in partnership with MSPs; of how to share our knowledge with them and listen to their guidance on how to achieve the aims of the CPG.  An understanding of the accountability of public and professional bodies was also overlooked consistently: for example, the allocation of public money and equality of care for patients.  Having campaigned against the unequal treatment of ME-CFS patients, the credibility of the CPG would be undermined if it were to argue now for a Centre of Excellence that advantages only some from the ME-CFS group.

Secondly, acknowledgement and understanding of the accountability of patient representatives in the CPG rarely featured during meetings.  The paper pointed out that CPG members are not elected by anyone;  nevertheless it is reasonable to expect them to have due regard to what might be the views of a wider ME-CFS community whose interests are affected by the decisions taken on their behalf.

The sub-group members’ response acknowledged the reality of the impact of ME-CFS on lives and the injustice experienced by individuals and families.  It also acknowledged that the CPG had no power to create a Centre of Excellence for M.E. or ME-CFS and that holding out for the former was unlikely to be successful and that the latter remained as distant as ever unless some compromise could be agreed.  It also noted its appreciation of the support given by MSPs, support that should never be taken for granted.

What took place at the final CPG meeting on 19^th September 2012?

Before announcing the result of the vote, Mary Fee, MSP, who has a personal interest in ME-CFS, said that for MSPs, all groups standing in parliament should be productive, have a level of influence and be seen as working together towards a common goal.  She commented on the problem of whom the CPG represented stating that the argument had rumbled on and had created a considerable amount of friction over the life of the group.  She felt that it would be backward looking to limit the CPG to only M.E. sufferers in the ME-CFS spectrum and that she would not continue as convenor to such a group and doubted whether other MSPs would continue their involvement.

Siobhan McMahon, deputy convenor, agreed and former CPG convenor, Alex Fergusson, said that, although in an ideal world there could be a CPG for M.E. alone, in the real world that wasn’t going to happen so the CPG should accept a compromise of ME-CFS in order to maintain influence.  Views were expressed about both the need to separate M.E. and CFS and the validity of acknowledging ME-CFS; the misleading nature of the options; and, as the debate raged on, in a moment of acrimony, outrage that MSPs should threaten and blackmail members with the vote.

As the convenor needed to draw the meeting to a close, the result of the vote was announced – a win for the ME-only lobby.  Out of 81 possible votes,

• Option 1: ME-only = 30
• Option 2: ME-CFS and “fatiguing conditions”= 5
• Abstentions = 12.

Later this result was reported as being a “landslide”. However, only 37% voted for a CPG for ME-only.  Putting it another way: that makes 67% who DIDN’T vote for it.

In closing the meeting, Mary Fee, MSP, proposed that, given there had been some backtracking on CFS by those members who supported option 1 and that there was now some confusion over the options, the result of this vote could be put aside and the CPG could reconsider redrafted options which would more accurately reflect the views now being expressed in order to identify if there was indeed consensus within the CPG.

Subsequent actions taken by those CPG members who supported option 1 meant that the convenor’s proposal was never enacted.  On the 20^th September Simon Lawrence, chair of the 25% ME Group, placed a notice on the charity’s Facebook page announcing the outcome of the vote and called for it to be upheld.  This could only be interpreted as a challenge to the convenor’s offer to try to identify consensus within the CPG and a positive way forward and a test of the MSPs’ views about the viability of the CPG if option 1 were adopted.

Furthermore, 22 members signed a letter of complaint to the Standards Procedures and Public Appointments Committee at the parliament about the convenor’s actions in respect of the vote and gave notice of no confidence in her if she refused to uphold the vote.  These challenges to the convenor and deputy convenors of the CPG were astonishing and left the convenors and supporting MSPs no choice but to resign from the CPG and bring about its closure.

According to comments on the ME Association webpage announcing the closure of the CPG, the members who supported option 1 remain resolute in their belief that their actions were justified.  The questions remain whether their actions were examples of good advocacy and representation, or whether M.E. and CFS patients (who have been left with no Cross-Party representation for their illness) deserved better and were badly let down by people purporting to speak on their behalf.

The post Fall of the Cross Party Group on ME appeared first on Edinburgh M.E. Self help Group.

This event will be held on Tuesday, 12th March 2013, between 6.00-7.30pm at the Scottish Parliament.

The person would have to attend the event and be featured on an A2 poster. The content for the posters will be consistent across all conditions and will comprise:

• Photo of individual
• Name of individual
• Age of individual
• Condition they have
• Length of time they have had the condition
• 3 or 4 main symptoms of their condition
• The biggest help(s) in my life
• The biggest hindrance(s) / challenge(s) in my life
• My hope for the future.

The individual will have the opportunity to speak directly to MSPs about their experiences and views on living with ME-CFS, concerns and hopes for the future, upcoming policy reforms and to ask the MSPs to sign the Neurological Alliance’s pledge to recognise the “Missing Million”.

Only 10 neurological conditions will be featured at the event so there is guarantee that ME-CFS will be picked.

Please contact ku.gro.hsemdenull@ofni by 6th February if you’re interested and would like to know more.

The post Urgent: Help edmesh represent ME-CFS at Scottish Parliament event appeared first on Edinburgh M.E. Self help Group.

There were 23 online surveys started but not completed. To give those people an opportunity to finish them, the deadline has been extended to Friday 8th February 2013.

The questionnaire and online survey link were sent out with the Winter newsletter. If you are having problems completing your questionnaire, please contact ku.gro.hsemdenull@ofni.

Edmesh work with Action for ME, ME Association, ME Research UK and other organisations directly or indirectly.

The more information we have from you, the better we can inform those who are in a position to take our case forward.

The post edmesh members’ survey – deadline extended appeared first on Edinburgh M.E. Self help Group.

There is information for health professionals on NHS Lothian’s RefHelp website. The lead therapist and her team have been invited to speak at the March Open Meeting,. There will be more information in the edmesh Spring Newsletter.

The post New Lothian ME-CFS Service at Astley Ainslie Hosptital appeared first on Edinburgh M.E. Self help Group.