The Oakdale Trust has given WAMES a grant of £1,000 to help us represent people with ME as we campaign for recognition and better services.
This will enable us to continue travelling to meetings, distributing information etc. beyond 2018 ME Awareness week. #TimeForUnrestWales
Find out how you can contribute to campaigning in Wales.
ME/CFS is under recognised and massively underfunded, and through the campaign #StopIgnoringME the goal is for people to do just that, to stop ignoring the 250,000 people suffering from ME in the UK.
MESiG invites you follow the campaign on their blog, Instagram, Facebook and Twitter. Let’s get people to #StopIgnoringME!
#TimeForUnrestWales
On Saturday 12 May, representatives from around the world will gather at Place des Nations in Geneva at 12pm, at the Broken Chair monument.
The Place des Nations in Geneva is the location of the United Nations and World Health Organisation.
Some of those who have not been able to attend in person have sent shoes.
Share the event on social media
A common treatment for chronic fatigue syndrome should be scrapped immediately, according to one of the UK’s leading experts in the illness.
Dr Charles Shepherd says graded exercise therapy (GET) can actually be harmful to some people.
He argues the idea of getting patients to do increasing amounts of exercise can lead to serious relapses.
The long-term illness affects around 250,000 people in the UK. It’s more common in women and the NHS says it tends to develop between your mid-20s and mid-40s. It can develop in your teens.
The effects can be totally devastating, leaving people bedbound for years. Despite its severity, the illness is still not well understood.
As well as fatigue, it can affect your brain and digestion as well as leading to extreme allergies.
Chronic fatigue: ‘Held hostage by ME’
Chronic fatigue trial results ‘not robust’, new study says
At the moment, the health watchdog NICE is updating its guidelines for treatment in England.
Wales, Northern Ireland and Scotland are all waiting to see what the recommendations are.
Other health experts disagree and say GET is both proven and a safe method of treatment.
Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis, or ME.
But they won’t be published until 2020 and Dr Shepherd – who’s the medical advisor to the ME Association – believes that’s too long to wait before GET is withdrawn.
GET is a treatment that encourages patients to do increasing amounts of physical activity day by day, month by month. The idea is to get the person used to being active again.
But Dr Shepherd argues it can actually do serious harm.
“Some people’s muscles are not capable of doing this type of exercise programme,” he tells Newsbeat.
“If they try and do too much physically, they make themselves more weak, more fatigued and can plunge themselves back into a relapse of all their symptoms.”
Those relapses can last for months.
In March this year, fresh questions were raised about the effectiveness of GET – after new analysis of the study that suggested it back in 2007.
Dr Shepherd says the problem with GET is that it’s too rigid and pushes patients too far.
“You can’t just exercise your way back to health.
“If graded exercise was a drug treatment doing this much harm, it would be withdrawn. But because it’s a physical activity intervention, it seems to have a different status with NICE.”
Presenter Emma Donohoe was diagnosed with M.E. when she was 19, an illness which many doctors don’t understand and people still talk about as “yuppy flu” – thinking sufferers are being lazy or too depressed to get out of bed.
Now at 24, Emma has been able to reduce some of her symptoms and wants to find out in a new BBC Newsbeat documentary if anything has improved since she first got sick and what life is like now for other young sufferers who are living with severe M.E.
An estimated 250,000 people in the UK are living with the illness, many bed bound and completely dependent on care. But change is coming as the way the illness is treated is being reviewed by NICE – the organisation which sets best medical practice. This follows consistent fears that the standard NHS treatments may be making people worse.
During the film, Emma meets sufferers and family members of those living with the debilitating condition such as young mum, Sophie, whose severe M.E. means her body is so sensitive she can only tolerate to be around her toddler for five minutes a day. She also meets Hannah whose condition means that when all of her symptoms flare, she can’t even drink water without vomiting.
And finally, Emma is left in tears after meeting the family of Merryn Crofts who lived with severe M.E. for six years and passed away in May 2017 just 10 days after her 21st birthday. Emma hears about the excruciating pain Merryn’s condition caused her, the struggle to find doctors who believed that her condition was physical and the shame she felt having an illness that is often doubted and widely misinterpreted.
In the film, Emma visits the latest research efforts to find new treatments and a better understanding of M.E.
Will she end with hope or despair?
Watch the documentary until 7 May 2019
Clinically, there is an overlap of several symptoms of chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD), including fatigue; brain “fog”; cognitive impairments; increased sensitivity to sound, light, and odour; increased pain and tenderness; and impaired emotional contact.
Adults with CFS (n = 59) or ASD (n = 50) and healthy controls (HC; n = 53) were assessed with the Autism-Spectrum Quotient (AQ) in a cross-sectional study. Non-parametric analysis was used to compare AQ scores among the groups. Univariate analysis of variance (ANCOVA) was used to identify if age, sex, or diagnostic group influenced the differences in scores.
Patients with ASD scored significantly higher on the AQ than the CFS group and the HC group. No differences in AQ scores were found between the CFS and HC groups. AQ results were influenced by the diagnostic group but not by age or sex, according to ANCOVA.
Despite clinical observations of symptom overlap between ASD and CFS, adult patients with CFS report few autistic traits in the self-report instrument, the AQ. The choice of instrument to assess autistic traits may influence the results.
began in 1993. American Tom Hennessey chose the birthdate of Florence Nightingale, as she was stricken by an ME-type illness in her 30s and was often bed-ridden during the rest of her life.
Blue Ribbon for MEAwareness raising got a focus in the UK in 1995 with the start of BRAME (Blue Ribbon Awareness for the awareness of Myalgic Encephalomyelitis).
The colour Blue continued to feature as once a year people died their hair blue, wore blue clothes or lit up public buildings with blue lights.
In the early days a small number of people were interviewed by the media for news features on May 12th and campaign organisers invited patients and carers to write letters to politician, health professionals and the media.
With the increasing popularity of social media many more people, including those who were housebound with ME were able to add blue ribbons, or twibbons to their social media pages. Thunderclaps became popular as a way for a single message to be mass-shared, flash mob-style. Some wrote blog posts (short for weblog) about their experiences of ME to be published on their own and other people’s blogs and Facebook pages.
No campaign takes place these days without a hashtag. A # is a strategy for linking posts and conversations on twitter on the same theme, wherever in the world they originate from.
Photo campaignsAs more and more people began to own mobile phones it became possible to join awareness raising campaigns by sharing photos of themselves and their friends e.g. Wear blue for ME
The biggest global campaign for ME to date encourages more people to get involved by inviting them to share photos, not of themselves, but of their shoes as a symbol of the Millions Missing out on normal lives through illness.
Combined with demonstrations, letter writing, petitions, etc. #MillionsMissing aims to raise the profile of the need for health equality.
Join an event near you on May 12th e.g. Cardiff, Bristol, Gloucester, Shrewsbury, Liverpool
Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort, by SM Collin, T Norris, P Gringras, PS Blair, K Tilling, E Crawley in Sleep Med. 2018 Jun;46:26-36.
OBJECTIVE/BACKGROUND: Sleep abnormalities are characteristic of chronic fatigue syndrome (CFS, also known as ‘ME’), however it is unknown whether sleep might be a causal risk factor for CFS/ME.
PATIENTS/METHODS: We analysed data from the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort. We describe sleep patterns of children aged 6 months to 11 years, who were subsequently classified as having (or not having) ‘chronic disabling fatigue’ (CDF, a proxy for CFS/ME) between the ages 13 and 18 years, and we investigated the associations of sleep duration at age nine years with CDF at age 13 years, as well as sleep duration at age 11 years with CDF at age 16 years.
RESULTS: Children who had CDF during adolescence had shorter night-time sleep duration from 6 months to 11 years of age, and there was strong evidence that difficulties in going to sleep were more common in children who subsequently developed CDF. The odds of CDF at age 13 years were 39% lower (odds ratio (OR) = 0.61, 95% CI = 0.43, 0.88) for each additional hour of night-time sleep at age nine years, and the odds of CDF at age 16 years were 51% lower (OR = 0.49, 95% CI = 0.34, 0.70) for each additional hour of night-time sleep at age 11 years. Mean night-time sleep duration at age nine years was 13.9 (95% CI = 3.75, 24.0) minutes shorter among children who developed CDF at age 13 years, and sleep duration at age 11 years was 18.7 (95% CI = 9.08, 28.4) minutes shorter among children who developed CDF at age 16 (compared with children who did not develop CDF at 13 and 16 years, respectively).
CONCLUSIONS: Children who develop chronic disabling fatigue in adolescence have shorter night-time sleep duration throughout early childhood, suggesting that sleep abnormalities may have a causal role in CFS/ME or that sleep abnormalities and CFS/ME are associated with a common pathophysiological cause.
Are probiotic treatments useful on fibromyalgia syndrome or chronic fatigue syndrome patients? A systematic review, by P. Roman, F. Carrillo-Trabalón, N. Sánchez-Labraca, AF Estévez, D. Cardona in Benef Microbes. 2018 Apr 26:1-10 [Epub ahead of print]
Evidence suggests that the gut microbiota might play an important role in fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS). Our goal is to systematically review the reported effect of probiotic treatments in patients diagnosed with FMS or CFS. A systematic review was carried out using 14 databases (PubMed, Cochrane Library, Scopus, PsycINFO, and others) in February 2016 to search for randomised controlled trials (RCTs) and pilot studies of CFS or FMS patient, published in the last ten years (from 2006 to 2016). The Jadad scale was used to asseverate the quality of the clinical trials considered.
Two studies (n=83) met the inclusion criteria, which were performed in CFS patients and both studies were considered as a ‘High range of quality score’.
The administration of Lactobacillus casei strain Shirota in CFS patients, over the course of 8 weeks, reduced anxiety scores. Likewise, this probiotic changed the faecal composition following 8 weeks of treatment.
Additionally, the treatment with Bifidobacterium infantis 35624 in CFS patients, during the same period, reduced inflammatory biomarkers.
The evidence about the usefulness of probiotics in CFS and FMS patients remains limited. The studied strains of probiotics have demonstrated a significant effect on modulating the anxiety and inflammatory processes in CFS patients.
However, more experimental research, focusing mainly on the symptoms of the pathologies studied, is needed.
WAMES is asking the Cabinet Secretary for Health:to #HelpNHSbeMEaware and to provide, as a matter of urgency, support and finance for a national training and awareness programme.
Email: Correspondence.Vaughan.Gething@gov.wales
Address: National Assembly for Wales, Cardiff Bay, Cardiff CF99 1NA
More info WAMES’ letter to the Cabinet Secretary
asking them to support our campaign and also write to the Cabinet Secretary
Find their names & contact details
WAMES’ letter to the AMs: #TimeForUnrestWales invitation
of your struggle to get an accurate diagnosis in your correspondence with the AMs and Cabinet Minister and with WAMES
