Become Involved, Including a Free Webinair Q&A on Monday 6 July. 
DecodeME has secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it.
On Monday 6 July at 4pm the DecodeME Management Team is hosting a free webinar Q&A, open to all.  The study should help us understand the disease and ultimately find treatments.  DecodeME is the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
Join DecodeME to help create the world’s biggest study of the causes of ME/CFS.  To find out more about the study you can read the latest updates, FAQs and explanation of the science.
 
Action for ME (AfME) -
DecodeME gets £3.2 funding for ME/CFS DNA study.
Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.
As part of the ME/CFS Biomedical Partnership, Action for M.E. is thrilled that, thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, a ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.  DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
 
The Medical Research Council -
The largest genetic study into Myalgic Encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.
 
National Institute for Health Research -
Largest genetic study into myalgic encephalomyelitis is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME) to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, jointly funded by the National Institute for Health Research and the Medical Research Council with £3.2m (£1.4m NIHR, 1.8m MRC), hopes to aid development of diagnostic tests and targeted treatments.
 
ME Association (MEA) -
Free Leaflet: DecodeME – The Largest Ever Genetics Study! 
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever Genetics Study!
This is a free 2-page leaflet about an exciting new study that we hope will be shared with anyone who has ME/CFS and might be interested in taking part.  Please register your interest now by visiting the DecodeME website. The study will begin in September with recruitment from March 2021.  Full details about the study’s launch, with comment from all involved, are available in the press release from 23rd June 2020.  Please note: Members of the ME Association will receive this free leaflet with the July issue of ME
 
Further AfME article -
"We can make DecodeME a success by working together." 
 
Further MEA articles -
MRC: Largest Genetic Study into ME is Launched! 
The DecodeME Genetics Study: Letters to The Times.
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA study!  Includes, UK Announcements

• The Medical Research Council: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched
• The Times: Chronic fatigue syndrome: Search for genetic clues by Sean O’Neil
• The Times: Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’ – Case Studies by Sean O’Neil
• The Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided by Tom Whipple
• The Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome by Haroon Siddique

Further information -
From the Independent   - Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition.  DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
 
From Australia’s Mirage News  - DecodeME, largest ever DNA study into myalgic encephalomyelitis, awarded £3.2m funding. Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
 
From Health Rising,  - DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness.  Cort Johnson points out  - “Simon McGrath, in his blog “UK spends £3 million on the world’s biggest ME/CFS study“, pointed out that of the two funders of the study, the Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any.”
 
For further background, see our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

• The Chronic Illness Inclusion Project (CIIP) Survey.
CIPP - Bridging the chronic illness community and the disability rights movement.  Do you have energy limiting chronic illness (ELCI)?  Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?

Dr Anna Ruddock, Advisor to the CIIP, says
"We are conducting this survey as part of the Chronic Illness Inclusion Project (CIIP). The CIIP works to build a collective voice for people with chronic illness so that we are better accounted for and included in society. The aim of this survey is to gather evidence for an inquiry by the UK Parliament’s Women and Equalities Committee into the unequal impact of Coronavirus (Covid-19) on people with protected characteristics. The Committee will use this evidence to provide recommendations to the UK government. We want to ensure that the impact of Coronavirus on people with chronic illnesses is taken into account during this process.

It should take no longer than 15 minutes to complete the survey. You can save your answers when you need to rest and return to the survey later. By completing the survey you are contributing to the effort to make the response to Coronavirus more equitable – thank you."

• Chronic Illness during the Coronavirus Covic-19 Pandemic.
This video is popular with people affected by ME.   The comedian, Miranda Hart, says - "If you are bored enough have a listen! I had a few things to share".  The part about chronic illness is mainly from around 10:40 onwards.  ME is specifically mentioned.

Another 'Chamble’ from Miranda Hart - again includes awareness on chronic illness. During this video, Miranda Hart reads, and discusses "Life in Lockdown: What Matters When All Is Lost" written by Naomi Whittingham.  Well worth watching - starts after about 14 minutes.  Naomi is the late Betty Hughes' granddaughter

• Short video to raise awareness of severe ME
In 2015, the late Betty Hughes' grandson Tom Whittingham, created a very moving ME Awareness YouTube video explaining how things are for his sister Naomi who has severe ME, and their whole family.
(From 2015 News)

A very large genetic study into ME/CFS.
The ME/CFS Biomedical Partnership are asking for help.  Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part.  The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.

The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.

Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks -  would you be willing to take part in research that will investigate the genetics of M.E.?

Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.

Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.

Reports available to download, and presentations to watch on YouTube:
The ME Association (MEA) 24 page Summary Report available to download,  and the MEA article describing the 2 day research conference.
Action for ME (AfME) article -  with presentations to watch on AfME YouTube channel.
Statement from the members of the CureME Team who presented at the UK CFS/ME Research Collaborative Conference in Bristol.

The aim of the CFS/ME Research Collaborative (CMRC) is to promote the discovery of the biological mechanisms that underpin CFS/ME, which will drive the development of targeted treatments.   The MEA and AfME give background on the CFS/ME Research Collaborative.
 
Recent research announcements:
AfME’s latest research article.
MEA’s November Summary of ME/CFS Published Research.
Includes the 84 page ME Association Index of Published ME/CFS Research, available to download.
Completed research studies and reviews funded by ME Research UK, [reviews available from 2000 to 2018].

Whole independent re-analysis of the PACE Trial recovery paper -
Now available outside of paywall.

“Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy?  A critical commentary and preliminary re-analysis of the PACE trial” 

Conclusion - “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

Explanatory PACE Trial recovery paper articles
(Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation) -
‘How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma’
‘Yet more research shows chronic fatigue syndrome is real. When will health services catch up?’
‘Getting it wrong on Chronic Fatigue Syndrome’
‘Call for retraction of PACE publication’

March 2015

Rituximab discussion –                                                                                         
With links to radio broadcast, and transcript

Following from MEA -

Rituximab discussion on BBC Radio Cambridgeshire | 22 March 2015 www.meassociation.org.uk/2015/03/rituximab-discussion-on-bbc-radio-cambridgeshire-22-march-2015/

Two Norwegian scientists, Øystein Fluge and Olav Mella, who have been researching the effects of an anti-lymphoma drug called Rituximab on people with ME/CFS, talked about their work on the BBC Radio Cambridgeshire programme ‘Naked Scientists’ yesterday (Sunday, 22 March).

To listen to the discussion, click on the following link to the BBC iPlayer: www.bbc.co.uk/programmes/p02ldh8b
It begins 39 minutes in.

Link to transcript made by Mr Russell Fleming: https://docs.google.com/file/d/0B-NT-7M70igucHpIUlRMbkhraWs/edit

SECOND DRUG TRIAL
 
A second anti-cancer drug is being tested on patients with ME/CFS at Haukeland University Hospital, Norway – where trials on Ritximab have already been carried out.
 
Dr Øystein Fluge, a member for he Rituximab team, will be giving cyclophosphamide infusions once every four weeks to up to 30 patients to see if their condition improves. This second drug is traditionally used to treat some types of malignancy – such as leukaemias and lymphomas.
 
More details on the cyclophosphamoide story here: http://wp.me/p3Txzy-5Xw

--- In IMEGA-e@yahoogroups.com, "Charles Shepherd"
<charles.c.shepherd@...> wrote:

MAY BE REPOSTED


Dear Professor Borysiewicz


Five years ago on this day BBC News reported on the MRC research
strategy for ME/CFS.  The news item - 'ME research action plan
revealed' - can still be accessed at:
http://news.bbc.co.uk/go/em/fr/-/1/hi/health/2581153.stm


The MRC announcement brought real hope to thousands of people with
ME/CFS, along with the expectation that MRC funding would now be
directed towards the underlying cause of this illness as well as
investigating forms of treatment that are not based on the deeply
flawed psychosocial model of causation.

Instead, all that has happened for the past 5 years is the
allocation of MRC funding to yet more studies into behavioural
treatments (ie the FINE and PACE Trials) that are largely based on
the idea that ME/CFS is maintained by abnormal illness
beliefs/behaviour and deconditioning.

Not surprisingly, people with ME/CFS feel badly let down and angry -
especially when a succession of proposals looking at causation have
been turned down by the MRC and promising new research initiatives,
such as the studies into gene expression being carried out by
Professor John Gow and Dr Jonathan Kerr, are having to be funded by
the medical charities, including the ME Association.

We presume you are aware that MPs are now so concerned about the
current situation that a House of Commons Adjournment Debate is
being sought for the New Year.

We appreciate that you have only recently taken over as Chief
Executive at the MRC.  Could we therefore ask that you take this
opportunity to look again at the way in which current systems are
not resulting in research initiatives into causation and non
behavioural forms of treatment being funded by the MRC.  One very
simple and cheap way to start 2008 would be for the MRC to place
announcements in the Lancet and other medical journals making it
clear that the MRC would very much welcome good quality research
proposals in the areas that we refer to.  We know from our own
experience as a medical charity which funds research that this can
be a very effective way of encouraging new research applications.

We would also be grateful if you would agree to meet with ME
Association representatives in the New Year to discuss our concerns.


Yours sincerely


Neil Riley
Chair

Dr Charles Shepherd
Hon Medical Adviser


ME Association
4 Top Angel
Buckingham MK18 1TH

Website: www.meassociation.org.uk




[Non-text portions of this message have been removed]

--- End forwarded message ---

--- In IMEGA-e@yahoogroups.com, "Colin Barton" <colin.sussexme@...>
wrote:


Perception versus polysomnographic assessment of sleep in CFS and
non-fatigued control subjects: results from a population-based study.

Journal: BMC Neurol. 2007 Dec 5;7(1):40 [Epub ahead of print]

Authors: Majer M [1,2], Jones JF [2], Unger ER [2], Solomon
Youngblood L [2], Decker MJ [3], Gurbaxani B [2], Heim C [1], Reeves
WC. [2]

Affiliations:
[1] Department of Psychiatry and Behavioral Sciences, Emory
University School of Medicine, Atlanta, USA
[2] Chronic Viral Diseases Branch, Centers for Disease Control &
Prevention, Atlanta, USA,
[3] Fusion Sleep, Suwanee, USA

NLM Citation: PMID: 18053240


ABSTRACT:
BACKGROUND: Complaints of unrefreshing sleep are a prominent
component of chronic fatigue syndrome (CFS); yet, polysomnographic
studies have not consistently documented sleep abnormalities in CFS
patients. We conducted this study to determine whether alterations in
objective sleep characteristics are associated with subjective
measures of poor sleep quality in persons with CFS.

METHODS: We examined the relationship between perceived sleep quality
and polysomnographic measures of nighttime and daytime sleep in 35
people with CFS and 40 non-fatigued control subjects, identified from
the general population of Wichita, Kansas and defined by empiric
criteria. Perceived sleep quality and daytime sleepiness were
assessed using clinical sleep questionnaires. Objective sleep
characteristics were assessed by nocturnal polysomnography and
daytime multiple sleep latency testing.

RESULTS: Participants with CFS reported unrefreshing sleep and
problems sleeping during the preceding month significantly more often
than did non-fatigued controls. Participants with CFS also rated
their quality of sleep during the overnight sleep study as
significantly worse than did control subjects. Control subjects
reported significantly longer sleep onset latency than latency to
fall asleep as measured by PSG and MSLT. There were no significant
differences in sleep pathology or architecture between subjects with
CFS and control subjects.

CONCLUSION: People with CFS reported sleep problems significantly
more often than control subjects. Yet, when measured these parameters
and sleep architecture did not differ between the two subject groups.
A unique finding requiring further study is that control, but not CFS
subjects, significantly over reported sleep latency suggesting CFS
subjects may have an increased appreciation of sleep behaviour that
may contribute to their perceived sleep problems.


[Note: This is an Open Access article.  The full text is
available for free in PDF at
http://www.biomedcentral.com/content/pdf/1471-2377-7-40.pdf ]

--- End forwarded message ---