Emma Shorter

Emma Shorter gives testimony before Parliament's Petitions Committee

Emma Shorter is a citizen of Scotland. She is an myalgic encephalomyelitis (ME) patient and volunteer for MEAction Scotland.

Advocacy projects

NICE 2017 Response

Jul 10, 2017, NICE 2017 Response: 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 (Emma is one of the authors of the The MEAction Network response.)

Parliament’s Petitions Committee

Emma gave parliamentary evidence on June 7th, 2018 on ME/CFS, the need for funding biomedical research, and her own experience with the disease and those who were in charge of her care. She had concerns for children unable to manage school and their parents being reported to children's services when their children cannot get to school due to being ill. Emma testified that patients need timely managed care support. She spoke about NICE guidelines being given information on patient harms due to Graded exercise therapy (GET) and Cognitive behavioral therapy (CBT). Emma agrees psychological support is needed but not CBT as it is employed to keep patients from believing they are sick. She is also in agreement with the need for nursing support and that wait times are too long.

Graded exercise therapy

Emma was encouraged to participate in (GET) by her doctor who described himself as the most knowledgeable on the disease. She was told her symptoms were a manifestation of her emotions. The clinic she went to told her to increase her walking by 10% each week and to push through to get better. She was able to walk 4 minutes a day when she began therapy and ended needing a wheelchair. She went back to her doctor and physiologist in a wheelchair and was told "Congratulations, we're so happy we helped you recover." She spoke about the US Institute of Medicine report that coined the name for ME/CFS as Systemic Exertion Intolerance Disease (SEID) to point out that the harmful effect of over-exertion in ME is so distinctive that this was the recommended name.

Child protection services and research funding

Emma gave testimony on the treatment of children. One-fifth of parents of ME/CFS children reported having protection referrals made against them. Healthcare practitioners do not understand how children can be so sick for so long and they begin blaming the parents. She was thankful for the £15,000 a year for three years and explained that world-class researchers in Scotland were eager to research this underfunded disease.

Diagnosis, disease management, and research

Emma spoke about international experts in the United States meeting for an agreement of best support and management of care which should be published later this year. She spoke of the research by Dr. Mark VanNess on aerobic metabolism and heart rate monitoring.

NICE guidelines

NICE guidelines are consulting patient groups on patient harms in reference to GET/CBT.

Psychological support vs CBT

Psychological support is welcome but (CBT) for ME/CFS is designed to keep patients from believing they are experiencing symptoms.

Nursing support

Emma agreed that a best practice would be to have nursing support. Investment in nurses is needed to decrease wait time for ME/CFS patients to see someone and to stop patient health deterioration and attain long-term improvement. (Although not stated in her response to an MP's question, Emma believes a best practice would be to have specialist consultants, trained GPs and nurses.)

Learn more

• Public Petitions Committee 07 June 2018 Full video of testimony uploaded by The MEAction Network via YouTube.

Load video

YouTube

YouTube might collect personal data. Privacy Policy

ContinueDismiss

Public Petitions Committee 07 June 2018 By The ME Action Network

Online presence

• Twitter

See also

• MEAction Scotland
• PACE trial
• Severe and very severe ME

See myalgic encephalomyelitis.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See chronic fatigue syndrome.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

(HR) - the number of times the heart beats within a certain time period, usually a minute

heart rate (HR) - the number of times the heart beats within a certain time period, usually a minute

NICE guidelines Clinical guidelines used in the UK.