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Please consider doing so. In particular at the following times of year which are set aside for #MEAwareness.
Relevant twitter tags include #MyalgicE #spoonie #MyalgicEncephalomyelitis #MECFS and #CFSME
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split my clinical time between the two illnesses, and I can tell you if I had
to choose between the two illnesses, I would rather have H.I.V.
But ME which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”
Dr. Nancy Klimas, AIDS and MyalgicEncephalomyelitis researcher
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“ME/CFS is not rare and it is highly debilitating,”
Professor Jonas Bergquist, the ME/CFS Collaborative Research Center at Uppsala University, Sweden.
“A key priority is to develop a diagnostic test for ME/CFS to increase
the accuracy of diagnosis,”
Dr. Carmen Scheibenbogen, Professor at Universitätsklinik Charité Berlin
The above quotes were issued in Brussels, Belgium 10 June 2020.
More than one 100 scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
With thanks to the ME Association charity for this information on their website.
bad news is we don’t know what causes it or how to treat it successfully.
But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness.”
Dr. Anthony Komaroff, Harvard (quotes Myalgic Encephalomyelitis)
“Over the last 35 years, there have been over 9,000 scientific
publications that compare people with the illness [Myalgic Encephalomyelitis] to healthy people of
the same age and sex,
and they find a whole variety of abnormalities.”
Dr. Anthony Komaroff, Professor at Harvard Medical School
patients] feel effectively the same every day as an AIDS patient feels two months
Professor Loveless, AIDS&ME/CFS Clinic
patients] are more sick and have greater disability than patients with chronic
obstructive lung or cardiac disease.”
Dr. William Reeves,
Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC)
Note from Katherine: I shared the above CFS quote on twitter. I was told that Dr William Reeves hasn't always been the most helpful in his attitude towards CFS patients.
This makes me all the more delighted to tweet these words of his which are helpful in validating the severity of the illness :-)
those who have studied the disease for many years, it is apparent that the most
serious issue in ME is a kind of brain malfunction that may be caused by an
infectious agent, or some other source that is, so far, poorly understood.”
Dr. David Bell, clinician and researcher (quote about Myalgic Encephalomyelitis)
“CFS/ME should be considered a multi system disorder with
many organs involved.”
Dr Cariente Pariante, King's College, speaking on Good Evening Wales, December 2018
“M E/CFS is a serious, chronic and systemic disease which frequently and dramatically limits the activities of affected patients.”
Appendix: Report of the Institute of Medicine, Beyond Myalgic Encephalomyelitis /Chronic Fatigue Syndrome: Redefining an Illness, Clinicians Guide, 10 February 2015. This report was based on the review by the American National Academy of Sciences and Institute of Health of approximately 9000 peer-reviewed studies into ME/CFS.
"When I had my health crash.... I was afraid I was going to see a practitioner similar to me.
A practitioner who was just going to look at my symptoms and say,
"Yeah, there's nothing really wrong here. All of your lab tests are mostly normal."
Dr Aimie Apigian
Katherine : Dr Aimie's initial training was in conventional medicine. She's a qualified surgeon.
After developing chronic fatigue syndrome, she started to investigate the biological affect of trauma in the body.
Move here to learn about trauma healing exercises you can do to help the body get into the state necessary for healing to take place.
Quote about ME/CFS from Sajid Javid. UK Health Secretary. 2021.
2022 re: quotes Myalgic Encephalomyelitis
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education – especially for the estimated 25% of people who have severe or very severe symptoms. Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise the quality of life.
… The [UK] government is committed to better care and support for people living with ME /CFS and their families.
… The chief scientific adviser has asked the UK clinical research collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into a ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area.
… Firstly, we do not know enough about a me/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of a ME/CFS.”
Sajid Javid, UK Secretary of State for health and social care
“These [ME] patients have been ignored for far too long,”
Pascal Arimont, member of The European Parliament (MEP)
need to make sure there is good quality education for healthcare professionals.
There is a group of dedication professionals working together (led by the amazing Dr Nina Muirhead) to make sure those that need a greater understanding can access it"
@SonyaChowdhury, (Chief Executive, @actionforme) June 2020 (quote about Myalgic Encephalomyelitis)
NICE guidelines (
National Institute for Health and Care Excellence
UK 2007) stated that
The symptoms of those with ME can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.
... management is difficult and complex, and healthcare professionals should recognise that specialist expertise is needed.
(Presumably more recent guidelines state the same.)
As I say please feel free to share these quotes about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome to raise #MEAwareness.
Either way, I hope they have helped to validate your own experience of this severe chronic illness, in your own life or in the life of a loved one.
Wishing you health both within and beyond illness,
Katherine T Owen
Katherine T Owen runs this website - www.HealingCFSME.com.
She is author of Be Loved, Beloved (Read it in paperback at lulu.com or on kindle)
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