Millions Missing Edinburgh

My name is Emma, I'm 23 and I've had M.E for 4 years. When I was first diagnosed I was told I was incredibly lucky, there was this great new treatment called cognitive behavioural therapy and graded exercise therapy and that they were proven to help people recover. I happily went along to the psychologist and physiotherapist. I seemed to be getting worse but I was told this was due to de-conditioning so I pushed on.When I began the treatment I was able to walk for about 5 minutes each day, by the end I could barely walk 5 metres. I was told by my physiotherapist and doctors that I had recovered, even though objectively I had worsened. I could not work, study or even live independently. Nowadays, although the PACE trial has been dis-credited, the treatments it suggests are still the only available to M.E patients

There are an estimated 20,000 people with M.E in Scotland. 25% of patients are housebound/bedbound. We don't know what causes M.E  and for almost a decade to  Medical research council  gave applicants £0 to find out. Per patients funding is less than for any other illness. 

Patients are coming together from around the world to demand better. I am one of the organisers of the Millions Missing protest outside the Scottish Parliament on the 12th of May to raise awareness of M.E. patients in Scotland.  I have attached a leaflet with more details. (See image below)

We are focusing on two things. 1. the chronic lack of funds invested in biomedical research and the urgent need to increase funding 2. Education of health care professionals in terms of recognizing the illness (research shows up to 50% of patients who are diagnosed by their GP with M.E don't have it!) and the best treatment for patients.

We are in the midst of writing our demands out more coherently with possible solutions, but we really need patients from around Scotland to send us their pictures, their stories and their shoes to represent them! 

Could you help get the word out? Would you like to participate? If you can't make it can you send a pair of shoes ? The address is on the leaflet image below.

Here is a link to the event: https://www.facebook.com/events/272397503207866/?active_tab=about

Best wishes, 

Emma Shorter

Share your story for M.E. Awareness Month

 

Action for M.E. will be publishing a report on NHS services for people with M.E.,  and using this as a platform to share individual stories that will highlight that people with M.E. matter.  If you think this would be of interest or if you have any questions please get in touch with me Richard Zak (This email address is being protected from spambots. You need JavaScript enabled to view it.) I will put you in touch with Clare who will be able to answers any questions etc.

 

If you are interested, you can complete the form on our website at www.actionforme.org.uk/share-your-story or use the paper copy I’ve attached if you prefer.

 

 

Attachments:
Download this file (2017 case study form rz.doc)2017 case study form rz.doc[ ]64 kB

Here is a copy of a new guide available.

A Guide to Self-Advocacy for those with long term Neurological Conditions

Attachments:
Download this file (A_Guide_to_Self-Advocacy.pdf)A_Guide_to_Self-Advocacy.pdf[ ]3508 kB

Invest in ME (Research) Press Release     1/2 Million Reasons for Progress with ME

INVEST in ME PRESS RELEASE:

Agents for Change - ½ Million Reasons for Progress with ME For Immediate Release

                                 UK 21st February 2015

UK Charity Invest in ME (nr 114035) today announces that its biomedical research fund for ME has now passed £1/2 MILLION – raised over the last four years by ME patients, their families and friends.

Whilst UK scientific research into ME has been starved of funding for a generation by the official funding bodies responsible for allocating public funds the charity’s supporters have used positive and inspired campaigning to change the path of research in the UK and Europe.

This crowdfunding has allowed the charity to initiate possibly the two most important research projects for ME in the UK – a gut microbiota study in the Norwich Research Park with IFR/UEA and a project leading to a clinical trial of the rituximab drug in cooperation with UCL.

2015 will see Invest in ME enter its tenth year as a charity – a year which brings together our tenth international biomedical research conference, our fifth international biomedical research colloquium and a solid foundation of biomedical research being created in Europe.

Five years ago Invest in ME created a proposal for a Centre of Excellence for translational biomedical ME research. The centre would provide clinical assessment, diagnosis and treatment for patients and training and information for healthcare staff and work collaboratively with international researchers.

With comparatively few resources the charity (all volunteers) and its supporters have established a foundation which could provide a real basis for future development and which will lead to better understanding and treatments for this physical illness.

The model we have is, with enough support, able to continue and expand and augment and achieve a real breakthrough in ME research in UK and Europe and the world.

Let’s Do It for ME is a patient-driven campaign to raise awareness and vital funds for the centre of excellence. The campaign was set up in 2011 and is run by ME patients who have the same objectives as the charity - high quality biomedical research resulting in a better understanding of the pathogenesis of ME as well as in the development of appropriate treatments. The campaign has supporters from all over the world and it has forced change through imaginative ideas, selfless efforts, dedication and positivity - a Can Do approach to a disease where so many have suffered unnecessarily for too long.

It is the Let's Do It for ME spirit - empowerment of patients and their families for action, a Can Do approach and positive campaigning and fundraising.

Together we are trying to improve the future for people with ME and their families and after reaching a milestone of £1/2 MILLION we are ready to reach our next target of £1 MILLION.

Our thanks go to the patients and their carers and friends and relatives who have campaigned for change and forced action to be taken and please join us in reaching our next target.

With enough support we can change things forever.

One small charity, one BIG Cause, one band of supporters – progress - change

“Things do not have to be the way they are – we can change things.” - Dr Ian Gibson

Let’s Do Change. Let’s Do It For ME.

Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.  tel: 02380 251719 or 07759 349743

References:

http://ldifme.org/ http://www.investinme.org/research.htm http://www.investinme.org/IIME-Newslet-1306-06%20IiME%20Foundation%20Project.htm http://www.ukrituximabtrial.org/

My name is David Jenkin. I am a personal trainer and exercise rehabilitation instructor. Together with Martin Westby, who is the editor of the popular Fibromyalgia Magazine, I have recently written an 85-page self-help exercise guide especially for persons living with Fibromyalgia and similar, related pain conditions.

The guide covers the different types of exercise, the benefits of exercise, how to pace yourself so as not to overdo it while ensuring you're working hard enough, a full home exercise programme (can be done seated, standing or a mixture of both), a full swimming-pool-based exercise programme, and nutritional guidance as well.

The guide is generously priced at just £14.95 including postage and packaging. The link for it is below:

http://www.ukfibromyalgia.com/treatments/self-help-exercise-guide-fm.html

Would you be able to alert your group members as to the existence of this guide please? I pride myself on the results I have seen with the Cullompton Fibro Group (in Devon) with whom I meet once a week for exercise.

I have also selected exercises that are suitable for everyone, even people in a wheelchair, with varying degrees of pain (which will hopefully start to alleviate with regular exercise), which can all be done sat down, requires no equipment making it cost-friendly, and does not require much in the way of space so people will not have to move furniture around etc. This information has also been posted on our facebook page.

David added, "there are several crossovers between how I work with persons living with Fibro and ME. "

"Together with Martin Westby who is the editor of the magazine we have written a self-help exercise guide that I would like to bring to the attention of everyone who has a pain condition. What I love about the guide is that not only does it provide key information on things like pacing yourself, how much exercise is safe, how to self-monitor your condition and when to stop, and what sort of exercises to do/avoid but it also provides a full exercise programme that people can do at home, sat down if need be, that is applicable to wheelchair-users, and that people can do easily as part of a longer-term health plan. There is also a programme included for swimming-pool/aqua exercising for
those who like this idea."

I would be very grateful if you could alert as many people as possible to this guide, in the hope it can change people's quality of life, increase energy levels, reduce pain and maybe lowering painkiller doses, and improve sleep patterns etc. 

New Hear Me, Influence M.E Projects

Please find attached information about the new projects which Action for M.E. is taking forward in Scotland over the next few months.  Participants at the open meetings which were held last year shaped the key goals and challenges laid out in these six projects.

We very much hope that you will want to participate, so that we can maximise the potential benefit from each project.​  Briefly, these are as follows:

Project one: Top tips on fundraising – February or March (tbc)

Project two: Local leaflet/information campaign – February to May

Project three: PIP and welfare reform - March

           

Project four: Self management video clips - February to April

Project five: Campaigning toolkit - February to April

Project six: Resource pack for newly diagnosed - February to April

For more information contact This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

"I was born Barry John Evans on the 8th April 1991 making me aged 23 at the time of writing this book". "I was born and raised in a little seaside town in the North West of England called Southport". "I was diagnosed with Asperger Syndrome aged nine". "I graduated from university in 2012 and also from a Personal Training academy". "I was diagnosed with Myalgic Encephalomyelitis on the 10th January 2013". "I have gone from mild to moderate in a short space of time and have since had to adapt my life to accommodate this". This book takes you through my entire journey from when I was young right up to this present day sharing my personal struggles along the way. My experiences have made me into a stronger person today despite suffering with a chronic illness. "This is a new chapter in my life and "A New ME". 10% of sales made online from this book will be going to the charity Invest in ME.

It is available from amazon with more info, reviews and a 'look inside'

http://www.amazon.co.uk/New-ME-Looking-future/dp/1499585497/ref=sr_1_1?s=books&ie=UTF8&qid=1404308995&sr=1-1&keywords=a+new+me

                               The ME/CFS Stigma

Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism.

Despite ME/CFS being an illness so severe that it has been found to cause a poorer quality of life than any major illness including cancer, its sufferers continue to be disbelieved, shamed and abandoned by doctors, friends and family.

This is an article which was recently featured on the phoenixrising.me website and featured on their facebook page for circulation to as many people as possible. This is the link to the article http://phoenixrising.me/archives/16291

 

Below is a pdf copy of the complete article.

Cort Johnson interviews Tom Kindlon (Introduction)

February 17, 2013

Introduced and edited by Stukindawski

TomKindlonPhoto2

Irish ME/CFS Association Officer & Peer-Review Published Author, Tom Kindlon

Last year, prior to Peter White’s PACE Trial ‘recovery’ paper, Cort Johnson conducted an extensive interview with Tom Kindlon on the subject of CBT. The interview is in three parts and can be accessed by clicking the following links:-

[Part One][Part Two][Part Three]

On the topic of definition, Cort and Tom discuss what CBT has come to represent in the field of ME/CFS: whether and how pacing, sleep hygiene and graded exercise are combined into this treatment. The definition of pacing itself is also considered, since what it actually represents differs greatly among researchers and patients alike.

On the efficacy of CBT, when does it produce a positive result, and how reliable is the report? Do subjective measurements allow for an influence-free, reliable source of data? Tom draws attention to research which concludes with far less favourable results than more highly publicised studies. His own work also highlights the startling deficit in the reporting of harms associated with CBT (particularly in combination with GET). In the absence of solid harms reporting, the wealth of data in this regard comes from patient surveys.

Tables1.4

Tom collected data for his paper from 9 surveys organised by 10 patient organisations in 4 countries. 3 of the surveys, including this one, were from non-English language surveys (Norwegian and Dutch

 

 On the reasons for the application of CBT to ME/CFS, Tom explains how the treatment is devised on the basis of a “fear avoidance” model where fear and avoidance of activity perpetuate a ‘reversible’ condition. Yet Tom refers us to data that demonstrates an abnormal physiological response to exercise. Repeat VO2 max testing returned diminishing scores in a pattern unique to ME/CFS, contrasting it with other forms of chronic illness. Studies which highlight changes in gene expression and cytokine storms following exercise are also noted. Ultimately this raises the question: should a treatment based on a contentious assumption of aetiology, supported only by mixed and subjective results, really be deployed to ME/CFS patients en masse?

On the media coverage of the PACE trial, Tom takes a critical look at the positive reports featured in the press. He points out that a lot of the media interviews had taken place before a wider audience was given a chance to read and critique the content of the paper. When the channels to critique the paper were finally opened, the restrictions placed on their form in order that they be considered for publication also prohibited the ability to produce a substantial reply. Tom’s insights into this media coverage raise important questions such as: does the impact of this research rely on Science or PR?

This substantial interview also covers a great deal more and includes extensive references to support the points that are made. I believe it to be a read well worth the time and energy and it should prove a great resource for patients and advocates alike. In my opinion, Tom Kindlon has cemented himself as a vital advocate for patients worldwide and provides a unique and studious counterpoint to some very contentious and questionable ME/CFS research. He stands as an example of the importance of patients being able to address the research community on an academic level in a succinct, respectful and thought provoking manner.

Tom (@TomKindlon on Twitter) has been helping to run the Irish ME/CFS Association as a volunteer for the last 17 years. His activities there have included editing the newsletter, dealing with enquiries, fund-raising and awareness-raising. Frustrated at the slow progress of research, for the last eight years he has taken a greater interest in reading many of the full research papers that have been published in the field. Now a regular commenter on research, 13 of his letters have been published in peer-reviewed journals on the subject of ME/CFS (not including one on so-called medically unexplained symptoms) along with something in the region of one hundred e-letters. His biggest contribution to the field was his paper “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” which was published in an open access journal and can be read for free.

For further information on his publications, see:
https://www.researchgate.net/profile/Tom_Kindlon2/

[Click Here To Continue To Part One Of The Interview]

 

 
Biomedical Research into
M.E.
 
Let's do it for ME is a patient led initiative to raise awareness and funds in support of Invest in ME biomedical research fund Everything is in place (People / Equipment) at the Norwich University Research Park for the first two research projects.
So far £58,500 has been raised towards the intitial target of £100,000 which will fund the first two research projects (gut / genome)
 
A Centre of Excellence that will include facilities at the University Hospital at Norwich for clinical
assessment, diagnosis and treatment.
 
To find out more about Let's do it for ME and how you / your group could help please visit our blog www.ldifme.org
 
    

There are lot's of ways to raise money for free and these can be found in the How to help section.

People might also be interested in our Make ME craft website selling crafts made by people with M.E. with part or all of the
profit from sales going to the biomedical research fund. http://www.makemecrafts.com/
 
The Real ME
I have been involved in a Midlands ME Support Group for many years. Two things in particular stick out in my mind and I’d like to share these with you.
First I was fortunate to get a chance to talk to an eminent doctor working on profiling the DNA of ME sufferers. He was giving the keynote speech at the AGM of one of the National ME Groups. During the course of this conversation I asked him “How confident are you that all the people you are testing really have full-blown ME?”
His response astounded me. He said that “Of all the people referred to my hospital for testing - less than half!” Now these people had been diagnosed by a GP or a Specialist and referred specifically for this trial. He went on to say “We admit all the referrals for a three day screening process to eliminate other possible explanations for their Chronic Fatigue”. Maybe, like me, you are shocked that so many of these professionals, doing the referring, had got it wrong. Then again maybe you are not so surprised!
Well it got me thinking: if less than half of those referred are actual ME sufferers, how does that reflect on other research findings in the ME field? In particular how many of the participants in the PACE trial would have passed the three day screening? All the more so since many of the PACE panels were self selecting against what, I believe, to be a very low criterion namely the Oxford. It is not my intention here to reopen the debate about the reliability and the creditability of PACE: but it is my intention to encourage a much better way of selecting the participants in future trials.
The second thing that stays with me is all the people who came to our Support Group who said something like “You don’t know how good it is to talk to somebody who actually understands ME; my GP doesn’t even believe ME exists”. Now this is actually another manifestation of the first problem I covered – namely the inability of many GPs to correctly identify ME. Could it be that it is has something to do with the low level of exposure the average GP has to people with ME? I believe the average GP has about 1500 patients on his/her books. Further statistics suggest that between a quarter and a half of one percent will have ME: ergo each GP can expect to encounter between 3 and 7 ME cases. Maybe it is not so surprising that all too often they seem to be poorly equipped to understand ME.
Further weight is given to this lack of clarity amongst GPs, by the experience of a fellow Trustee. He was a GP, who was appointed as the ME Specialist for his PCT area. He found a very significant number of the referrals to his clinic were not suffering from ME (Chronic Fatigue Syndrome) but were suffering from some other manifestation of Chronic Fatigue. Further he said that the quality of the referral letters and information given by the referring GPs was often poor and suggested a lack of confidence in diagnosis and understanding of ME 
As a Trustee of Resumecfs (the clue is in the last five letters!) I was very pleased when we embarked on two projects to address these issues.
  1. The expansion of a Disease Register specific to ME
  2. A GP Awareness Campaign.
The aim of the Disease Register is to provide a data bank of people, whose ME has been assessed against the highest criteria, willing to take part in future Research projects into ME. The plan is to supplement this further by creating a Biobank holding blood (and maybe later post-mortem tissue samples) of the participants in the Disease Register. These together should ensure quicker and much more reliable groups for research into ME.
The aim of the GP Awareness is to provide GPs with a check-sheet (developed by my colleague who was the GP ME specialist) which sufferers can complete and take to their GP as a basis for discussion on their symptoms. Allied to this is a set of basic Guidance Notes which might be of use to the sufferer and especially to his/her GP.
There is much more detail of this on our web site www.resumecfs.org.uk. This covers, amongst a lot of other information;
  • The various criteria used to define ME,
  • An Application form to down load and send to offer yourself for inclusion on the Disease Register
  • The Symptoms check sheet for the GP Awareness and the Guidelines
Our chairman, Professor Derek Pheby gave a presentation on all this and for those with internet access this film is available on our web site. It is also available on YouTube (enter resumecfs) and indeed your ME Support Group should have a DVD copy in your library.

But if we are to make progress on these important fronts we need the active support and the engagement of People with ME – that probably means you. 

Sent to us by :- Alistair McLachlan

 

 

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic

Tom Kindlon Irish ME/CFS Association sent this out:-

 

I thought I would draw attention to a paper of mine that was recently published in a peer-reviewed journal: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome".

The paper can be downloaded by anyone for free at: http://bit.ly/sUsWs3  i.e. http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk%3D&tabid=501. I was hoping you would consider highlighting it in some way e.g. including it in a newsletter and/or e-mail message and/or linking to it from your site/mentioning it on your site.

 

ABSTRACT*

Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions.

To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms.

Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys.

Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future.

Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patientoriented and objective outcome measures are discussed.

The recently published PACE (Pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation) trial which explicitly aimed to assess “safety”, as well as effectiveness, is also analysed in detail.

Healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET.

 

This is a link to the summary of his paper:- http://www.mediafire.com/?aakh988228t0rnk

 

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