ME in children – Specialist lectures on video

Posted on 11/24/2014 by wames

Seminar on children and young people with ME/CFS – 2014

On November 12, 2014 the National Association for ME in Sweden organized a seminar on children and young people with ME/CFS.

The seminar was conducted in cooperation with RME Stockholm and RME Scania and held at County Hall in Stockholm. They filmed lectures, accessed through the links below.

Introduction -Henrik Fransson, chairman RME Stockholm, Stig Nyman, councillor

Orthostatic intolerance and ME/CFS in children – Peter C. Rowe, Johns Hopkins Children’s Center, United States

ME/CFS in children – Diagnosis and Treatment – Nigel Speight, The University Hospital of North Durham, UK. Dr. Speight also discussed the “assault”  health professionals and other agencies expose children to because of misdiagnosis in cases of ME/CFS.

The immunological / viral / endocrine interactions in ME/CFS –  Dr. Amolak S. Bansal, Department of Immunology, St Helier Hospital, UK.

Living with ME/CFS as a child – Nathalie Gillberg 14 years and suffering, and Camilla Gillberg, parent says.

Panel Discussion

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End ME/CFS project

Posted on 11/13/2014 by wames

Cort Johnson on the OMF’s new project:

The Open Medicine Foundation (OMF) has announced it has created and is raising funds for a huge “End ME/CFS” project. They’re looking for five million dollars a year to fund it — about double the NIH’s [National Institutes of Health in US] current annual spending on all ME/CFS research. That’s a really ambitious project. Could they actually pull it off?
“What is needed is a total attack on the problem.” – Ron Davis PhD

I think they could, and the reason why starts with Ron Davis PhD, the originator and leader of the project. Davis has been thinking about producing a high-level consortium to attack Chronic Fatigue Syndrome (ME/CFS) for years. The idea of a consortium immediately came up when I first talked to him about three years ago. His son, Whitney, had introduced us. Whitney was quite ill then, but since then has gotten much worse. He now has one of the worst cases of ME/CFS I’ve heard of.

In order to understand where this project is coming from and why it might work let’s take a look at the man behind it.

Dr. Ron Davis
“He’s a frequent provider of disruptive core technologies.”

Ron Davis PhD has directed the Stanford Genome Technology Center for twenty years. He has a long list of firsts by his name including one – using restriction fragment polymorphisms to construct genetic linkage maps – that helped launch the field of genomics in 1980 and ultimately made the Human Genome project possible.

He’s won numerous awards and prizes (Eli Lilly, Distinguished CIT Alumni and NAS Awards and Dickson , Gruber and Warren Alpert Foundation Prizes). He won the Lifetime Achievement Award from the Genetics Society of America ten years ago. PubMed lists over 500 publications for Dr. Davis – the most I’ve seen for a researcher.  One researcher wrote that Davis’s contributions to the field of genetics are so seminal that it’s impossible to quantify their impact

At the presentation of the Warren Alpert Prize last year Harvard Medical School geneticist Clifford Tabin concluded that Davis’s contributions were so seminal in the world of genetics and disease that it was “impossible to quantify the impact” he and his colleagues had had.

One nominator for Davis’s Gruber Prize stated Davis has “provided the indispensable infrastructure that has driven the astonishing pace of genetic discoveries, as well as provided key technical, intellectual and conceptual contributions to a breathtaking range of genetic problems.”

In 2013 Davis was pegged in an Atlantic Monthly article as one of eight inventors tomorrow’s historians will consider the greatest inventors today. “He’s not just a one-hit wonder,” said Church. “He’s a frequent provider of disruptive core technologies.”

Frequent is the word. Three years ago Dr. Davis talked about the urgent need to assess the role the HLA region of our genome plays in ME/CFS. No one, however, had been able to figure out how to analyze this very complex region of our genome. In the interview below he reports his lab has developed a low cost means of doing that.

It’s safe to say that nobody with this kind of background and reputation has worked in the ME/CFS field before.

The Biggest Challenge
“I really enjoy working on problems that others think are unsolvable.” – Ron Davis

Now Davis is engaged in the biggest challenge of his career: solving Chronic Fatigue Syndrome. He’s best known for his ability to devise creative solutions that clear up technological impasses. He likes nothing better than to attack complex problems. With its diverse population, its many unanswered questions and its lack of funding beating ME/CFS is the biggest challenge of Davis’s career.

He’s got one now and not just at a technological level. The other stuff was easy compared to solving the mystery of a disorder that isn’t well-defined, is mostly ignored by the powers that be, and that has had a spotty record of research.

Davis believes both the field and medicine itself are ripe for breakthroughs. He’s been making the rounds telling everybody that ME/CFS is the field to be in now. This is the place to make big breakthroughs that resonate throughout the medical field. He is convinced that cracking ME/CFS will not just solve ME/CFS, but will provide key insights to the other puzzling neuro-immune disorders that dot the medical field.

Heavyweight Group

The idea is to get experts from inside the field and from outside the field. The ME/CFS experts will lend their deep knowledge of this field. The experts from outside the field will bring a rigor and creative approach to problem solving that has made them experts in much larger fields than ME/CFS.

He’s gathered a group of heavyweight researchers to help him. Thus far Davis been able to gather a group of partners the likes of which we haven’t seen before in ME/CFS. The Scientific Advisory Board includes (and the list will grow over time to include ME/CFS experts and more outside researchers):
Mark Davis PhD – (170+ publications) runs own immune lab (The Mark M. Davis Lab) at Stanford. One of the things he’s doing is characterizing what a normal immune system actually looks like.

Mario Capecchio PhD – (200 + publications) molecular geneticist and Nobel Laureate and Lasker prize winner

Craig Heller PhD (150 + publications) – Stanford exercise physiologist and the inventor of “the glove”, a device that reduces body temperature in order to increase muscle performance.

Baldomero M. Olivera PhD (300+ publications) – a University of Utah neuroscientist focusing on how the ion channels and receptors affect nervous system signaling.

Ron Tompkins MD, ScD – the leader of the sepsis consortium Dr. Davis participated in, Dr. Tompkins (350+ publications) has produced ground-breaking work on the process of inflammation.

Andreas Kogelnik MD, PhD – ME/CFS expert and founder of the Open Medicine Institute.

James Watson PhD – the Nobel Prize laureate who, with Francis Crick, uncovered the structure of DNA.

How many boards boast two Nobel Laureates? No one has ever brought this much brainpower together to study ME/CFS before.

An Emphasis on Rigor
“We wanted the right answer no matter whose theories we destroyed.” – Ron Davis on the Trauma Consortium

Ron Davis is a stickler on scientific rigor. Time and again in our discussions over the years he’s emphasized the need not to be beholden to any preconceived notion – to be open to where the science leads you.

In this process you put everything you know or think you know about ME/CFS at risk. You’re ruthless in your quest for the truth. Instead of trying to prove something is right, your first goal is to find the chinks in a finding’s armor. It’s like looking at a diamond. You hold it up and look at it from every angle to find any flaws. Then you attack the flaws. Anything that makes it through the fire of this kind of rigorous inquiry is rock-solid. You can bank on it. Ruthless analysis and rigorous experimentation allows seminal findings to emerge.

Then you figure out your priorities. If it requires creating new technology (and it will) you do that. You gather a large number of representative patients and focus on them throughout. Then you find the best experimentalists in the field and you have them do the lab work. You gather another large cohort of patients and validate the findings.

At every step you use the best technologies, the best materials, the best study designs, and the best researchers.

This kind of research is the antidote to the recent AHRQ report which eliminated 90% of the studies it gathered up for consideration because of methodological and other problems. It’s about producing findings that stick. It’s about producing seminal insights the field can build on for years.

Expect Surprises
“We discovered that the main theory of trauma taught in medical schools was totally wrong.”

Don’t be surprised if their efforts don’t overturn some ideas regarding ME/CFS. In fact, be surprised if this effort doesn’t yield completely novel ideas about ME/CFS.

It wasn’t as if trauma was an unknown entity when the Tompkins group took it on. It had been studied extensively – just not in the comprehensive manner his group used to look at it. It turned out that lots of the ideas regarding trauma and sepsis were wrong.

By the time this consortium has completed its mission, you can expect a new field to emerge. Expect ME/CFS to be completely redefined. Expect several subsets or perhaps disorders inside of it pop out. Expect them to illuminate numerous pathways that lead to the production of “ME/CFS”.

Mega ME-CFS Project
“I really enjoy working on problems that others think are unsolvable, and I’ve been finding, to my surprise, that the older I get, the easier it is to take on those problems.” – Ron Davis

This is research on a different level than we’re used to. It’s a $5 million a year project. That sounds like a lot of money. For ME/CFS it is a lot of money – about double the federal funding for this disorder – but it’s not a lot of money for the NIH. It’s not a lot of money for medical research, and it’s definitely not a lot of money for an often disabling disorder that affects a million people or more in the United States and many millions more across the world. Community support is needed. Community support is needed.

Still for anyone else, given where ME/CFS is, it might seem like a pipe dream. But this is the man who created the technology that made the Genome Project possible. This is the man named as the most likely person in the medical field to be designated one of the greatest inventors of his time. This is a man whose son has one of the most severe cases of ME/CFS you’ll ever find. If anyone can solve the multitude of puzzles that constitute this disorder, he can.

He’s going to need help. Davis is not a rah-rah kind of guy. He’s an inventor, not a publicist. Give him the tools and I’m confident he can engage the collaborators and invent the technologies we need to crack this disorder, but he needs our support.

This is a long-term effort. Don’t expect answers overnight. New technologies will need to be developed. But give this Consortium the funding and time it needs and it’s hard to imagine it won’t succeed.

To support the project go HERE or contact OMF by email 

Dr. Davis Talks
“The millions of suffering ME/CFS patients are owed an apology and a concerted urgent effort to find effective treatment” Ron Davis

Read more about Ron Davis and the project at: “End ME/CFS” mega CFS project begins

 

 

 

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Severity scales in CFS/ME

Posted on 10/30/2014 by wames

Research abstract

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a physical and cognitive disabling illness, characterised by severe fatigue and a range of physiological symptoms that primarily affects women.

The immense variation in clinical presentation suggests differences in severity based on symptomology, physical and cognitive functional capacities.

In this review paper, we examined a number of severity scales used in assessing severity of patients with CFS/ME and the clinical aspects of CFS/ME severity subgroups. The use of severity scales may be important in CFS/ME as it permits the establishment of subgroups which may improve accuracy in both clinical and research settings.

Severity Scales for Use in Primary Health Care to Assess Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by
SL Hardcastle, EW Brenu, S Johnston, D Staines, S Marshall-Gradisnik in Health Care Women Int. 2014 Oct 14:0. [Epub ahead of print]

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Diagnostic criteria for CFS & ME

Posted on 10/28/2014 by wames

Abstract

The current study had two objectives. (1) to compare objective and self-report measures in patients with chronic fatigue syndrome (CFS) according to the 1994 Center for Disease Control (CDC) criteria, patients with multiple sclerosis (MS), and healthy controls, and (2) to contrast CFS patients who only fulfill CDC criteria to those who also fulfill the criteria for myalgic encephalomyelitis (ME), the 2003 Canadian criteria for ME/CFS, or the comorbid diagnosis of fibromyalgia (FM).

One hundred six participants (48 CFS patients diagnosed following the 1994 CDC criteria, 19 MS patients, and 39 healthy controls) completed questionnaires assessing symptom severity, quality of life, daily functioning, and psychological factors.

Objective measures consisted of activity monitoring, evaluation of maximal voluntary contraction and muscle recovery, and cognitive performance. CFS patients were screened whether they also fulfilled ME criteria, the Canadian criteria, and the diagnosis of FM.

CFS patients scored higher on symptom severity, lower on quality of life, and higher on depression and kinesiophobia and worse on MVC, muscle recovery, and cognitive performance compared to the MS patients and the healthy subjects. Daily activity levels were also lower compared to healthy subjects.

Only one difference was found between those fulfilling the ME criteria and those who did not regarding the degree of kinesiophobia (lower in ME), while comorbidity for FM significantly increased the symptom burden. CFS patients report more severe symptoms and are more disabled compared to MS patients and healthy controls.

Based on the present study, fulfillment of the ME or Canadian criteria did not seem to give a clinically different picture, whereas a diagnosis of comorbid FM selected symptomatically worse and more disabled patients.

What is in a name? Comparing diagnostic criteria for chronic fatigue syndrome with or without fibromyalgia by
M Meeus, K Ickmans, F Sruyf, D Kos, L Lambrecht, B Willekens, P Cras, J Nijs in Clin Rheumatol. 2014 Oct 14. [Epub ahead of print]

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Defining recovery in CFS

Posted on 10/28/2014 by wames

Abstract

INTRODUCTION: Adamowicz et al. have reviewed criteria previously employed to define recovery in chronic fatigue syndrome (CFS). They suggested such criteria have generally lacked stringency and consistency between studies and recommended future research should require “normalization of symptoms and functioning”.

METHODS: Options regarding how “normalization of symptoms and functioning” might be operationalized for CFS cohorts are explored.

RESULTS: A diagnosis of CFS excludes many chronic disabling illnesses present in the general population, and CFS cohorts can almost exclusively consist of people of working age; therefore, it is suggested that thresholds for recovery should not be based on population samples which include a significant proportion of sick, disabled or elderly individuals. It is highlighted how a widely used measure in CFS research, the SF-36 physical function subscale, is not normally distributed. This is discussed in relation to how recovery was defined for a large intervention trial, the PACE trial, using a method that assumes a normal distribution. Summary data on population samples are also given, and alternative methods to assess recovery are proposed.

CONCLUSIONS: The “normalization of symptoms and function” holds promise as a means of defining recovery from CFS at the current time. However, care is required regarding how such requirements are operationalized, otherwise recovery rates may be overstated, and perpetuate the confusion and controversy noted by Adamowicz et al.

Assessment of recovery status in chronic fatigue syndrome using normative data, by By A. Matthees in Qual Life Res. 2014 Oct 11. [Epub ahead of print]

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Row over 4 nations comparitive study of NHS

Posted on 10/20/2014 by wames

In Wales online on Oct 17C 2014:

We cannot trust the Department for Health’: Carwyn Jones attacks Whitehall in astonishing blast

Wales First Minister has accused the Department for Health in London of being too politicised and said that Wales could not work with it.

Mr Jones made the blunt comments during an exclusive interview with the Western Mail in which he defended his administration’s running of the NHS against attacks from opposition parties and professional groups like the British Medical Association.

In the first part of the interview, Mr Jones spoke about his hope of rebuilding trust in politicians and countering the threat of UKIP

The First Minister referred to a story we ran last week in which Monmouth Conservative MP David Davies criticised the Welsh Government for allegedly “blocking” a comparative study of the NHS in the four UK nations to be carried out by the respected international organisation, the OECD.

The Welsh Government said it wasn’t prepared to participate in the study, and put off a visit to Wales by OECD officials, when the Department of Health said it planned to use statistics in the draft report in next year’s general election campaign.

The Welsh Government said such statistics in the section on Wales would be “unverified” before it confirmed their accuracy.

Such concerns follow attacks by the Conservatives on the NHS in Wales over longer waiting times and cross-border issues which see some patients in Wales deprived of drugs they could be prescribed in England.

Conservative Party chairman Grant Shapps has made it clear that his party will be drawing attention to the Welsh NHS’s perceived inadequacies during the run-up to May’s general election.

Referring to the OECD story, Mr Jones said: “Scotland and Northern Ireland are as annoyed as we are. There was an agreement that this would be a four-nation assessment.

“The Department of Health refused to give an assurance that they wouldn’t use unverified figures in the general election.

“So ourselves, Scotland and Northern Ireland said ‘let’s follow the usual process here and embargo the figures until after the general election’. They wouldn’t do it – that’s how politicised the Department of Health has become.

“We’ve said that if they don’t sort this out, we’ll go ahead ourselves and have an OECD assessment [commissioned by us] rather than wait for them and the political games they’re playing. Hey presto – the story was fed to a Conservative MP.

“The Department of Health, I’m afraid, we do not trust at all. It’s the most politicised department of any department of Whitehall. They have form on this – they did it on veterans’ health. We can’t work with them, frankly. We could not share anything confidential with them. They would leak it.”

The Department of Health did not wish to respond to the First Minister’s comments.

Last month Mr Jones dismissed calls from the BMA for an independent inquiry into the state of the NHS in Wales.

Speaking to AMs, he said people he knew in the medical profession did not share the BMA’s belief that the health service in Wales was facing “imminent meltdown”.

Asked who were the people he’d sought a reaction from over the comment, Mr Jones said: “What I said was that I knew a lot of medical students when I came to work in Cardiff {as a barrister}, and as a result of that I now know a lot of consultants and GPs, and I did take the views of a number of them.

“I think use of the phrase ‘imminent meltdown’ was unfortunate. It hasn’t happened and I don’t think it will happen. I very much welcome the fact that in the discussions which have taken since and the public pronouncements they have made the BMA has emphasised their willingness to work with the Welsh Government. These things happen from time to time, but we want to work with them.”

Mr Jones said he didn’t accept the need for the sort of inquiry the BMA had called for.

He said: “They’re asking for an inquiry into their own members, if they think about it. When particular issues have surfaced, like [concerns over the treatment of patients at] the Princess of Wales Hospital [in Bridgend], for example, we have conducted investigations into that. But there are no grounds to have a full inquiry into the NHS or the practice of doctors in the NHS in Wales.

“There were management problems at the Princess of Wales – there’s no question about that. There’s a new team in there now. What was important was that there was an investigation into what had happened. People were able to and they did take part in that investigation, and that has identified the problems. It was said that spot checks have to take place around Wales, and that’s been done.”

Mr Jones said: “We have a health service, and it’s true across the UK, where demand ever increases. Keeping up with that demand is always a challenge and we’ve met that challenge this year by finding more money for the health service – that much is true. But if you look at the increase in demand over the last decade – A&E attendances have gone up by 70%.

“With the Ambulance Trust, for example, it’s true to say that they’ve fallen short of their target, but in comparison to this time last year, they’re carrying more people.

“The rising demand in the NHS is a challenge for us, but also for Scotland, for England and Northern Ireland as well. For us in Wales we have to make sure that we fund the NHS to a level where people in Wales would want, but it does of course mean there are difficult decisions to be made elsewhere.”

Asked whether he was worried by cases where people living in Wales complained about not being able to get access to certain drugs or medical procedures that would be available to them if they lived across the border in England, Mr Jones said there were drugs like Abraxane, for example, that were available in Wales but not in England.

He said: “It’s quite common for us, of course, to pay for people from Wales to pay for particular medical procedures in England, because that’s where the centres of specialisation are. No-one is suggesting that the Welsh NHS should be entirely self-contained and that nobody should get treatment elsewhere.

“If you look at cancer, for example, we do far better in terms of cancer treatment than England. We get drugs more quickly than in England. There are cancer drugs available in Wales that are not available in England – and the same is true the other way round.”

Mr Jones said the method of assessing whether particular drugs should be available was being reviewed.

He said: “We want to make sure it’s fair across the whole of Wales,” he said.

The First Minister denied he had become a “constitutional obsessive”, preoccupied with what powers the Assembly should have rather than the bread and butter issues that concern real people.

He has been criticised for this by Welsh Tory leader Andrew RT Davies, who used a speech to tell him: ‘Stop talking about more powers and sort the Welsh NHS out’

Mr Jones said: “No. I’ve become obsessive, I suppose, about a UK that stays together. If you look at what happened in Scotland, there’s no way you can argue that things are going to go back to what they were before. From my point of view I want the UK to have a new structure – one that keeps the UK together, one that accommodates the different nationalities in the UK, but one that gets the balance right between solidarity and autonomy.”

 

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Relaxation therapy and CFS & FM

Posted on 10/20/2014 by wames

Abstract
OBJECTIVE:
To establish the effects of relaxation therapy on autonomic function, pain, fatigue and daily functioning in patients with chronic fatigue syndrome or fibromyalgia.

METHOD:
A systematic literature study was performed. Using specific keywords related to fibromyalgia or chronic fatigue syndrome and relaxation therapy, the electronic databases PubMed and Web of Science were searched. Included articles were assessed for their risk of bias and relevant information regarding relaxation was extracted. The review was conducted and reported according to the PRISMA-statement.

RESULTS:
Thirteen randomized clinical trials of sufficient quality were included, resulting in a total of 650 fibromyalgia patients (11 studies) and 88 chronic fatigue syndrome patients (3 studies). None of the studies reported effects on autonomic function. Six studies reported the effect of guided imagery on pain and daily functioning in fibromyalgia. The acute effect of a single session of guided imagery was studied in two studies and seems beneficial for pain relief.

For other relaxation techniques (eg. muscle relaxation, autogenic training) no conclusive evidence was found for the effect on pain and functioning in fibromyalgia patients comparison to multimodal treatment programs. For fatigue a multimodal approach seemed better than relaxation, as shown in the sole three studies on chronic fatigue syndrome patients.

CONCLUSION:
There is moderate evidence for the acute effect of guided imagery on pain, although the content of the visualization is a matter of debate. Other relaxation formats and the effects on functionality and autonomic function require further study.

The effect of relaxation therapy on autonomic functioning, symptoms and daily functioning, in patients with chronic fatigue syndrome or fibromyalgia: a systematic review by M Meeus, J Nijs, T Vanderheiden, I Baert, F Descheemaeker, F Struyf in Clin Rehabil. 2014 Sep 8. pii: 0269215514542635. [Epub ahead of print]

 

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Online programmes & ME/CFS

Posted on 10/19/2014 by wames

Abstract
BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term, debilitating condition that impacts numerous areas of individuals’ lives. The two predominant treatment options for ME/CFS are cognitive behavioral therapy and graded exercise therapy; however, many people have found these techniques unacceptable or even damaging. This pilot study aimed to evaluate the utility of a specialized online symptom management program for ME/CFS in comparison to an online meditation program in an effort to ascertain whether this tool could be a further option for those with ME/CFS.

METHODS:
THIS EXPERIMENTAL DESIGN CONSISTED OF TWO INTERVENTIONS: a specialized online symptoms management program (N=19) and a control intervention based on an online meditation website (N=9). A battery of questionnaires, including measures of multidimensional fatigue, illness-specific symptoms, perceived control, and mindful awareness, were completed before the participants commenced use of the programs and following 8 weeks’ use.

RESULTS:
Significant differences were found in the areas of chance and powerful others’ locus of control, and sleeping difficulties, but not in ME/CFS symptomatology overall.

CONCLUSION:
The specialized online program described in this study warrants further investigation, as it appears to influence perceived control and key ME/CFS symptoms over time.

Pilot study investigating the utility of a specialized online symptom management program for individuals with myalgic encephalomyelitis/chronic fatigue syndrome as compared to an online meditation program by MA Arroll, EA Attree, CL Marshall, CP Dancey in Psychol Res Behav Manag. 2014 Sep 2;7:213-21

 

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ME/CFS & FM Health Services Action Plan

Posted on 10/10/2014 by wames

On 16 September 2014 the Health Minister, Mark Drakeford, wrote to Local Health Boards drawing their attention to the Action Plan for improving services for people with ME, CFS and Fibromyalgia in Wales.

The Action Plan was devised by the ME/CFS and FM Task & Finish Group (which included WAMES), which met between December 2013 and May 2014, and looked at how to overcome the barriers that Health Boards face when providing services for patients, and is published as a Report and Recommendations. It is available on the WAMES website and will also become available on the Welsh Government website.

The 11 recommendations focus on strengthening pathway and service implementation arrangements and improving the patient voice in the process, not on discussing or defining the nature of ME, CFS and FM and the implications of that for treatments and management. Those discussions will inevitably take place at Health Board level between all the stakeholders.

The 9 main recommendations state that each Health Board should:

  1. identify an Executive Board member with responsibility for overseeing implementation of the recommendations below
  2. identify, by April 2015, an appropriate clinical lead or leads for ME/CFS and Fibromyalgia to take forward the recommendations and to identify a “home” for services for ME/CFS and Fibromyalgia. (not in mental health)
  3. identify relevant specialists and those with expertise or interest in developing services to establish a stakeholder group or groups (including patient representation) to support the clinical lead or leads in ensuring the effective delivery of recommendations 4-8
  4. develop effective local pathways for children and adults with ME/CFS and Fibromyalgia, by drawing on Map of Medicine pathways, Scottish Good Practice Guide, Neurological Delivery Plan and emerging guidance [& FM sources]
  5. undertake work to raise awareness of ME/CFS and Fibromyalgia in primary care, to support timely diagnosis and effective management of both children and adults
  6. identify the means by which they will provide support to people with ME/CFS and Fibromyalgia who need to attend hospital, or receive palliative care, as well as ensuring the delivery of care as close to home as possible, including the provision of telemedicine/home visits to severely affected patients unable to attend appointments via other means
  7. produce a practical, realistic and timed action plan to improve patient experience of services by people with ME/CFS and Fibromyalgia during 2015-2018, and report annually on progress
  8. release a representative (or representatives) to form an All Wales Implementation Group (which will also include third sector patient representatives)
  9. The Implementation Group to provide an All-Wales overview of service-improvement for ME/CFS and Fibromyalgia in implementing recommendations 1-8.

The report then goes on to highlight main problem areas that Health Boards need to address:

  • Improving GP understanding and timely diagnosis
  • Co-ordinating a range of health care specialists under clinical leads, not in mental health but not ignoring mental health needs of patients
  • A clear pathway to be developed based on patient needs and utilising and developing existing professional interest and expertise
  • Children’s services to include support from education and social care services and help transitioning to adult services. The practice of inappropriate pressure at attend school when ill and misdiagnosis of ‘Fabricated illness’ leading to child protection proceedings to be avoided.
  • The lack of in-patient hospital services and home visits (domiciliary services) for the approximately 25% severely affected.

Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia (FM) Task And Finish Group Report and Recommendations, August 2014

Grŵp Gorchwyl a Gorffen Enseffalopathi Myalgig/Syndrom Blinder Cronig (ME/CFS) a FFibromyalgia (FM) Adroddiadac Argymhellion Awst 2014

Health Minister’s letter to Health Boards

WAMES comments:

We are aware that everybody is very frustrated by the length of time this is taking and that no additional money has been allocated to this task. There is still a long way to go and it could be next year before patients and carers can get involved in local stakeholder groups to discuss patient needs with health professionals in their Health Board area.

On the plus side work is well underway on the development of a pathway in Hywel Dda. Hopefully this work will be of benefit to the other Health Boards and speed up the process there.

There are a number of things that we are particularly pleased have been included in the Report:

  • A timetable and monitoring of progress at a national level.
  • The importance given to the patient voice when developing a pathway and services.
  • The use of the term ME/CFS, though we would have preferred the term used by the WHO: ‘encephalomyelitis’.
  • Highlighting the Scottish Good Practice guide (which promotes the Canadian guidelines) and the need to heed emerging guidance.
  • Highlighting the relevance of the Neurological Delivery plan to ME and CFS.
  • Highlighting the key problem areas of timely diagnosis, misdiagnosis as a mental health condition or ‘fabricated illness’, attitudes to children and education, services for the severely affected.

WAMES will continue to be involved at a national and local level and push for speedy progress and will be hoping patients and carers all over Wales will be able to join in, when the time comes. We intend to join Health Boards in looking for constructive solutions to service provision in less than ideal circumstances. It is hoped that as health professionals learn more about the nature of ME and patient needs, they will become as keen as us to see services improve.

 

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Florence Nightingale letters brought together online

Posted on 09/01/2014 by wames

A vast archive of letters from Florence Nightingale, many intensely personal and revealing about the woman usually seen as the shadowy Lady with the Lamp, is being brought together online and made freely accessible for the first time.

The originals of thousands of letters in which she discusses her life’s work of medical reform, nursing training and hospital design – and also her anxieties, exhaustion, and the mysterious illness that kept her bedbound for years – are scattered in different institutions around the world, including the Florence Nightingale Museum, the Wellcome Collection in London, and the Howard Gotlieb Centre at Boston University, which have now brought their collections together online.

Read more in Guardian article: Florence Nightingale letters brought together online

May 12th was chosen for International ME day because it is the birth date of Florence Nightingale, the nurse who inspired the founding of the International Red Cross. She is understood to have become ill in her mid-thirties, with an unknown debilitating condition. Despite her illness and being largely bedridden, she founded the first School of Nursing. Her example inspires people with ME to persevere and work for change.

 

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