Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
List of news articles on ME and CFS
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
== About ME/CFS and Patients == === Funding === '''Chronic fatigue syndrome recognized at last'''<ref>{{citation |last = Solomon | first = Rivka | date = 9 November 2015 | title = Chronic fatigue syndrome recognized at last|url= http://www.sfchronicle.com/opinion/openforum/article/Chronic-fatigue-syndrome-recognized-at-last-6620617.php|newspaper= San Francisco Chronicle|location= |access-date= }}</ref> ''San Francisco Chronicle'' By: [[Rivka Solomon]]. (09 Nov 2015) "After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure." '''Rethinking chronic fatigue syndrome'''<ref>{{citation |last = Rowley|first = Sylvia | date = 6 August 2016 | title = Rethinking chronic fatigue syndrome|url= https://www.thesaturdaypaper.com.au/2016/08/06/rethinking-chronic-fatigue-syndrome/14704056003560|newspaper= The Saturday Paper|location= Melbourne|access-date= }}</ref> ''The Saturday Paper'' By: Sylvia Rowley. (06 Aug 2016) "Despite world-class research into chronic fatigue syndrome being undertaken nationally, government funding and support for sufferers is grossly lacking." (Note: This article was also in the Aug. 6, 2016 hard copy edition with the title "What about ME?"; online non-subscriber readers are allowed one free article per week.) '''ME is often dismissed – but sufferers like Emily Collingridge are dying'''<ref>{{citation |last = Harris | first = Scott Jordan | date = 30 March 2012 | title = ME is often dismissed – but sufferers like Emily Collingridge are dying | url = https://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome|newspaper= The Guardian|location= London|access-date= }}</ref> ''The Guardian: Opinion'' By: Scott Jordan Harris. (30 Mar 2012) ''"How many young people have to die before 'chronic fatigue syndrome' merits properly funded biomedical research?"'' '''The Tragic Neglect of Chronic Fatigue Syndrome'''<ref>{{citation |last = Khazan | first = Olga | date = 8 October 2015 | title = The Tragic Neglect of Chronic Fatigue Syndrome|url= http://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/|newspaper= The Atlantic|location= Washington, D.C.|access-date= }}</ref> ''The Atlantic'' By: Olga Khazan. (08 Oct 2015) "It leaves people bed-bound and drives some to suicide, but there's little research money devoted to the disease. Now, change is coming, thanks to the patients themselves." '''Stigmatized Chronic Fatigue Syndrome sufferers seek recognition'''<ref>{{citation | author=<!--Staff writer(s); no by-line.--> | title = Stigmatized Chronic Fatigue Syndrome sufferers seek recognition | url = http://www.ctvnews.ca/health/stigmatized-chronic-fatigue-syndrome-sufferers-seek-recognition-1.3067130|newspaper= CTV News|location= Toronto | date = 10 September 2016|access-date= }}</ref> ''CTV News''. (10 Sep 2016) "As many as 400,000 Canadians suffer from Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis. But according to a federal review, their condition is all in their minds. Canada's largest scientific funding agency recently decided that ME/CFS is not deserving of research funding because it is not a legitimate disease, and more likely made up by patients." ===Treatment guidelines and recommendations === '''Chronic fatigue syndrome advice scraps exercise therapy'''<ref>{{Cite news | last = | first = | date = October 29, 2021 | title = Chronic fatigue syndrome advice scraps exercise therapy|url=https://www.bbc.co.uk/news/health-59080007|publisher=BBC News|access-date=2021-11-05}}</ref> ''BBC News''. (Oct 29, 2021) A health watchdog has scrapped a previous recommendation of graded exercise therapy for ME. The [[National Institute for Health and Care Excellence|National Institute of Health and Care Excellence]] (NICE) has published a long-awaited and contentious final update to [[NICE guidelines|guidance]] on treatment. Many patients with ME or chronic fatigue syndrome (CFS) say the therapy, which encourages patients to [[graded exercise therapy|slowly increase their levels of activity]], makes their condition worse. The advice was due out in August. But NICE pulled the publication at the last minute. At that time, NICE said the delay was necessary to allow more conversations with patient groups and professionals, so that its advice would be supported. There are strong and varied views on how the illness should be best managed. '''Stop prescribing exercise to ME sufferers, doctors told'''<ref>{{Cite news | last = Roberts | first = Lizzie | date = October 29, 2021 | title = Stop prescribing exercise to ME sufferers, doctors told | url =https://www.telegraph.co.uk/news/2021/10/29/stop-prescribing-exercise-sufferers-doctors-told/|newspaper=The Telegraph|access-date=2021-11-04|url-access=registration}}</ref> ''The Telegraph'' By: Emma Baines. (Oct 29, 2021) "Campaigners hail ‘huge step’ towards better care as clinicians will instead work with patients to establish their energy limits." '''Updated ME/CFS guidance finally published following controversy'''<ref>{{Cite news | last = Baines | first = Emma | date = Oct 29, 2021 | title = Updated ME/CFS guidance finally published following controversy|url=https://www.nursingtimes.net/news/policies-and-guidance/updated-me-cfs-guidance-finally-published-following-controversy-29-10-2021/|newspaper=Nursing Times|access-date=2021-11-04}}</ref> ''Nursing Times'' By: Emma Baines. (Oct 29, 2021) '''Graded exercise therapy (GET) should not be used to treat patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CSF) because it can worsen the condition, according to updated guidance from the National Institute for Health and Care Excellence (NICE).''' The NICE guidance published today also states that cognitive behavioural therapy (CBT) should not be considered a cure for ME/CFS, although it may sometimes be beneficial in managing mental health consequences of living with the condition, as with any chronic illness. {{Quote2|text=“This severe, complex multisystem disease has long been misjudged by the healthcare profession" | author = [[Caroline Kingdon]], nurse and NICE committee advisor}} Instead of being encouraged to push themselves to be more active, patients with ME/CSF should receive individually tailored support from a multidisciplinary team to help them manage their symptoms, and stay within their energy limit, the guidance recommends. This recommendation reflects a shift towards considering ME/CFS as a complex, multi-system disorder instead of as a psychosomatic condition that can be treated or cured with psychological and/or behavioural interventions. The NICE guideline includes clarifications to the diagnostic criteria that should be used to identify ME/CFS. It is characterised by four key symptoms: debilitating fatigue that gets worse following activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties known as “brain fog”. Anyone with all four of these symptoms lasting three months or more should be assessed by a ME/CFS specialist team. “During my many years as a nurse, I have rarely encountered individuals who are as ill as people with the most severe ME/CFS. Even when people with mild disease consider themselves fully recovered, they have often simply adjusted their lives to manage its effects. “The new ME/CFS guideline promises to treat people with ME/CFS with compassion, ensuring that the care they receive is safe and of the highest standard, and is delivered appropriately according to the needs of the individual.” —Caroline Kingdon In draft guidance published earlier this year NICE said that based on the “low to very low” quality of the evidence supporting GET for ME/CSF, and because of the worsened symptoms reported by people with ME/CSF who have been treated with GET, it should no longer be used in this patient group. {{Quote2|text=People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose | author=Dr [[Charles Shepherd]], [[ME Association]] medical advisor and NICE committee member}} This decision has been welcomed by ME charities and patient advocacy groups as a “step in the right direction”. Dr Charles Shepherd, medical advisor to charity the ME Association, who was on the NICE committee that prepared the new guideline until he stood down in August this year, said: “People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose – because it recommended treatments that were either ineffective or harmful. ''''Don't exercise' doctors tell chronic fatigue patients'''<ref>{{Cite news | last = Purves | first = Robbie | date = Oct 29, 2021 | title = 'Don't exercise' doctors tell chronic fatigue patients|url= https://www.birminghammail.co.uk/news/health/dont-exercise-doctors-tell-chronic-22005416|newspaper=Birmingham Mail|access-date=Nov 4, 2021}}</ref> ''Birmingham Mail'' By: Robbie Purves. (Oct 29, 2021) A controversial new report recommends patients with chronic fatigue syndrome should not exercise. A highly anticipated final update on chronic fatigue syndrome treatment (CFS) has been published the National Institute of Health and Care Excellence (NICE). Controversy on how to treat patients with myalgic encephalomyelitis (ME) or CFS, has raged by decades. Some patients find therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse. In the newly released report, NICE recommends people judge their own "energy limit" when undertaking any physically exertive movements. It warns doctors: "Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms." '''ME exercise therapy guidance scrapped by health watchdog Nice<br />'''Victory for campaigners as therapy they rated ‘harmful’ is taken off list of recommended treatments'''<ref>{{Cite news | last = Marsh|first = Sarah | date = Oct 29, 2021 | title = ME exercise therapy guidance scrapped by health watchdog Nice<br />Victory for campaigners as therapy they rated 'harmful' is taken off list of recommended treatments|url= https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance|newspaper=The Guardian|access-date=Nov 4, 2021 | author-link = | archive-url=|archive-date=}}</ref>''' ''The Guardian'' By: Sarah Marsh. (Oct 29, 2021) Graded exercise therapy has been removed as treatment from the guidance for managing chronic fatigue syndrome.<br /> A disputed therapy that encourages people with ME to gradually increase physical activity will no longer be officially recommended, a health watchdog said, marking a victory for campaigners. The controversial treatment, called graded exercise therapy, has been removed from guidance given by the National Institute for Health and Care Excellence (Nice) for diagnosing and managing myalgic encephalomyelitis, which is also known as chronic fatigue syndrome. The long-awaited landmark guidance had been due in August but was put on hold following concerns from some groups over its contents. It is thought some health professionals had been unhappy with some of the recommendations made by Nice.
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs