ALT Almost no ME/CFS patients return to work "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher. The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB) Emilie Wee Journalist Published 21 March 2025 - 00:01

ALT "Life shrinks with ME/CFS" which highlights different severities of ME/CFS and how they affect patients.

ALT [Image: A black and white illustration of a sick person in bed. The bedside table is covered in meds and sick stuff. The person in bed is reaching for the shelves above them which are out of reach. The top shelf has a jar and a box on it which are labelled: Plans, Hopes & Dreams. The second shelf has Fitness, Kids, and Career on it. The third shelf has Get Dressed, Eat, and Shower on it.

ALT Photo of supporters holding banners such as “ empty stadium” and “cure ME/CFS”

ALT Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies

ALT [ID: Comic of long haired person who appears very ill, lying in bed, reaching up towards shelves of various containers on the wall. The containers are all named: Plans, hopes & dreams, fitness, kids, career, get dressed, eat, and shower. There is a circle that says "Living with ME/CFS" in the top right corner. Comic by instagram.com/lubakerart]

ALT Thanks to Laura Scheepers who has written out the text: The white ring, with 'healthy individual' has - nonlimited ability to care for self and others - nonlimited ability to attend events - nonlimited ability to exercise and play sports - nonlimited ability to traven The yellowish ring with 'mild ME/cfs' say: - limited ability to work full time - limited abilty to be active - limited ability to tolerate loud/stimulating environments The orange ring, with 'moderate ME/cfs' says: - limited ability to work (may only tolerate WFH) - limited ability to leave house and attend social events - limited ability to complete errands The dark orange ring with 'moderate-severe ME/cfs'has housebound as subtitle and says: - limited use of shower - limited ability to prepare meals - limited ability to move about household The red ring with 'severe ME/cfs' says: - limited use of restroom - limited use of books and technology The poopbrown ring with 'very severe ME/cfs' has bedbound as subtitle and

ALT Home The University of Edinburgh News Scale of how ME/CFS affects blood revealed Scale of how ME/CFS affects blood revealed People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. White male lying in a bed looking tired The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease. Significantly, the results were mostly unaffected by patients’ activity levels, as low activity levels can sometimes hide the biological signs of illness, experts say.

ALT Slide explaining that exertion does not just equal exercise

ALT Frequency-domain near-infrared spectroscopy (ISS OxiplexTS, model 96,208, ISS Inc., Champaign, IL) used in the measurement of frontal cortical microvascular oxygenation (StO2)

ALT A drawing of a woman trying to do the washing up with a rain cloud raining down on her and a bag of bricks on her back weighing her down, all making life difficult ME/CFS is written on the side

ALT Nobody tells you that most people with severe ME only became severe by continued over-exertion. Pushing through symptoms, or praising people's exercise posts is harmful. 1 IN 4 WITH M.E. ARE HOUSEBOUND OR BEDBOUND

ALT 2 graphs comparing the prevalence rates and funding for the following conditions: Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS

ALT I got a virus and never got better

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ALT News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge

ALT GOING TO THE DOCTOR WHEN YOU HAVE A CHRONIC ILLNESS What people think it's like ---------- pie chart showing: Go to appointment Get diagnosed Receive treatment and support Heal your body and get better What it's actually like --------- pie chart showing: Waiting months for an appointment Multiple/ongoing appointments Being left untreated Treatments being ineffective and/or dealing with side effects Worsening and/or new symptoms Dealing with Medical gaslighting @flexiblegonewrong

ALT 2 images: on top, a group of people going wild at a party-type event with the text "my friends tonight". Below, somebody tucked up in bed on their own with the text "me tonight"

ALT Woman lying in a hospital-type bed #MEACTION M.E. is a career-ending, life-destroying disability. M.E. impairs patients' ability to function on a regular basis both cognitively and physically. 75% cannot work and some of the rest only work part-time. 25% of patients are housebound or bedbound, with the sickest unable to brush their teeth or feed themselves.

ALT Purple T-shirt with message "ambulatory wheelchair users exist." Under the text as an illustration, from left to right, of a stick figure getting up from a wheelchair, then a narrow, then the stick figure walking.

ALT Creatine and Post-Viral Fatigue Syndrome: Can a Gym Supplement Support Brain Recovery? David Propst Jun 07, 2025 A month ago, I shared a post exploring the potential of creatine in managing post-viral fatigue. Just yesterday, an updated peer-reviewed study was published and it adds important new insights. Published in the Journal of the International Society of Sports Nutrition, the paper dives deeper into creatine’s role in energy metabolism, cognitive recovery, and long COVID–related fatigue. Let’s break down what’s new, what it confirms, and what it means for anyone navigating post-viral fatigue.

ALT Most recently, the team discovered the drug trimetazidine could prove to be a game-changer for people with chronic fatigue syndrome. The medication works by increasing energy generation in the mitochondria of the cell and is listed in the World Anti-Doping Agency’s (WADA) List of Prohibited Substances and Methods. “What’s interesting is that it only enhances energy generation under load and if there’s abnormality. It doesn’t do it at rest, which is a very desirable effect of the medication because you don’t want it to rev you up the way that amphetamines do,” says Berk. “We think that this is going to be attractive [for chronic fatigue syndrome] because it is essentially an energy problem, and we have an energy treatment. We’re still going through the regulatory approval processes, and hopefully we’ll be able to start up a pilot study fairly soon.”

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ALT Table 6. Duration of PEM, illness course, and functioning (N = 1534). Items %(n) Length of prolonged, unpredictable recovery period 95.2 (1460) Within 24 h Between 1 and 2 days Between 3 and 6 days Between 1 week and 1 month Between 1 and 6 months Between 6 months and 1 year Between 1 and 2 years Over 2 years Crash that has never resolved 14.1 (216) 38.9 (596) 58.0 (890) 46.7 (717) 30.3 (465) 13.6 (209) 9.8 (151) 12.3 (189) 67.1 (1029)

ALT Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.

ALT I've just changed my social media profiles: I have now spent 31 years severely affected/virtually housebound with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome since age 22 (i.e. more than half my life). [I first became ill at age 16, 36.5 years ago, but was initially less severely affected but was undiagnosed]. I'm one of millions around the world. We need more public and private money to make research progress soon, the quicker the better: my life and the lives of others are passing by. For anyone interested, here's a list of some ME/CFS research funds: http://phoenixrising.me/resources-2/research-charities Here's my story as told in the Irish Independent in 2015: 'No one chooses to have ME - everything changed when I became ill' https://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html #MyalgicEncephalomyelitis #MillionsMissing #ChronicFatigueSyndrome #MEcfs #CFS #PwME Photo of a woman

ALT Katie Twinn pSedotonsric02uggf1u6f99gg7f690h45322hfu11g3ili08005m9t12gfu · This is Lucy Mayhew. It is, was, her birthday today. She died on the 27th of March 2024. She had severe ME. She had been a perfectly healthy young woman, working as a successful journalist when she became ill. We met through the support group I run with Craig. I was an advocate for Lucy, her voice, trying to educate the uneducated in severe ME, trying to help her get the care she so desperately needed until I could no longer continue due to my own circumstances. Her suffering was unbearable - she was bedbound, barely able to speak, she couldn’t sleep, was in agonising pain. Her symptoms were relentless and exhausting. Yet her courage, love, determination and positivity shone through. I was one of a very few number of people who knew what she suffered, but also knew what a warrior she was. Just getting through a day of that level of suffering would be too much for most. When I was trying to help her I fou

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ALT Reduced Blood Flow to Head in Post-Exertional Malaise JUNE 30, 2024 SHIVANI UGRIN Share Reduced Cerebral Blood Flow (CBF) -- including while lying down -- may underlie the pathophysiology of Post-Exertional Malaise (PEM) in Myalgic Encephalomyelitis (ME). Lumia Health recently collaborated with Workwell Foundation on a 2-day CPET pilot research project, and the surprising findings were shared as a poster session at the American College of Sports Medicine (ACSM) annual conference.

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ALT The rise of ME/CFS in longcovid according to my neurologist. Personal Story I just came back from my neurologist. I asked him about the study published last week which found a 4.5% prevalence of ME/CFS in people who had Covid. He said before the pandemic, his whole team of 3 people, who deal with the ME/CFS cases here, treated 10 patients PER YEAR. Now, after Covid19, he alone sees 5 patients PER WEEK to determine and/or treat patients for ME/CFS. And that is just in my small town university hospital. I thought that 4.5% number was crazy high, but its consistent with the experience of the medical professionals here... Anyway, I just wanted to raise some awareness. If you or anyone you know has longcovid and experience PEM, take it seriously! Don't try to be a tough guy and power through it. You can make it worse! I know I did.

ALT Neurological post-COVID syndrome is associated with substantial impairment of verbal short-term and working memory — Charles James et al. "We found that PCS patients with neurologic symptoms were impaired in working memory and attention. Of note, we performed the TAP test twice during the neuropsychological assessment revealing significantly longer reaction times at the second investigation, potentially reflecting a consequence of cognitive fatiguability."

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ALT ME/CFS and Long COVID Study Suggests Immune Cells Robbing the Body of Energy Vishnu Shankar, a PhD. Stanford student, engineered a study that assessed energy production in ME/CFS patients’ immune cells. Shankar focused on immune cells because their energy needs are so high. It turns out that protecting the body from pathogens is quite an energy-intensive project. Even when it’s not fighting off an infection, the immune system uses about 15-20% of our energy. (When it is fighting off an infection, the body will devote about 25% of its total energy expenditure to the immune system.) Read more here>>

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