#CFS%F0%9F%91%87

2026-02-27

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Screenshot from Institute for Neuro-Immune Medicine newsletter

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

Hope and Help for Fatigue & Chronic Illness Podcast! 


 
 


	In this episode, Haylie Pomroy shares insights with Dr. Anthony L. Komaroff to examine the history of ME/CFS research, the causes and triggers of ME/CFS and other post-infectious chronic illnesses, and the abnormalities observed in the brain and autonomic nervous system among patients with ME/CFS and Long COVID.

Dr. Komaroff also addresses how patients have often been dismissed within the healthcare system, explains the physical and psychological processes involved in these conditions, and discusses how he and other clinicians are now leading the way in diagnosis and treatment.
2026-02-27

37-minute video: "The Biology of Post-Infectious Chronic Illness" with Dr. Anthony L. Komaroff

youtube.com/watch?v=u282aUTpyIA

I haven't watched so far but he is usually good in these videos

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

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1,080 views  Feb 10, 2026  Clinical Research
Read "ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature" – co-authored by Dr. Anthony L. Komaroff & W. Ian Lipkin.
https://www.frontiersin.org/journals/... 

Fatigue is the body’s hard-wired response to a viral infection.

In today’s episode, Haylie Pomroy shares insights with Dr. Anthony L. Komaroff to examine the history of ME/CFS research, the causes and triggers of ME/CFS and other post-infectious chronic illnesses, and the abnormalities observed in the brain and autonomic nervous system among patients with ME/CFS and long COVID.

Dr. Komaroff also addresses how patients have often been dismissed within the healthcare system, explains the physical and psychological processes involved in these conditions, and discusses how he and other clinicians are now moving to the forefront of diagnosis and treatment.
2026-02-27

Exciting to read about some of the expensive ME/CFS & long Covid research planned in Germany (using some of the €500 million budget) including that using long-term samples which allow comparisons of samples before and after developing the conditions

helmholtz.de/en/newsroom/artic

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Long COVID, ME/CFS, and other post-infectious diseases pose new questions for medicine and society. With the long-term data from the NAKO Health Study, Germany now aims to systematically clarify why some infections leave lasting effects and how those affected can be better supported.

Post-infectious diseases are on the rise. Infections such as COVID-19 can lead to chronic conditions such as Long COVID or ME/CFS months or even years later, affecting hundreds of thousands of people in Germany.
As part of the National Decade Against Post-Infectious Diseases, the Federal Ministry of Research, Technology, and Space (BMFTR) is investing approximately 500 million euros over the next decade to systematically research causes, disease mechanisms, diagnostics, and therapies and to improve care.
The NAKO Health Study, with 200,000 participants, provides crucial long-term data and enables a rare before-and-after comparison with data and biosamples from before, during, and after infection.
The aim of research is to determine the actual prevalence of post-infectious diseases more accurately, to better understand the underlying biological processes, and to effectively support those affected through targeted interventions in the future.
2026-02-27

From David Tuller

The Times covers another severe case, Guardian has a non-triumphalist piece about "brain-retraining" and ME/CFS (it seemed to work completely for a while, and then came another relapse), and more:

virology.ws/2026/02/27/trial-b

#MEcfs #LongCovid #CFS #PwME @mecfs

2026-02-27

Some information via Prof Simon Carding about the DISCOVER-ME research project that has received €7.5 million in EU horizon funding.

From
s4me.info/threads/eu-horizon-f

Well done to all involved and all the charities that have helped make it happen

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

"DISCOVER-ME includes 21 partners and ME research groups spread across Europe and North America. I co-lead the programme with an Austrian colleague and in addition to the Quadram Institute, Cardiff Univ. and David Price are the UK, and PRIME, representatives in the consortia."

Title Biological evidence and mechanism-based disease classification for the improved diagnosis, prognosis and treatment of ME/CFS (DISCOVER-ME)

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystem disease affecting up to 1% of the population. It is defined by post-exertional malaise, persistent fatigue, cognitive and neurological symptoms, and autonomic, endocrine, and immune dysfunction. Clinical heterogeneity and the absence of specific diagnostic tests lead to long delays in diagnosis, lack of effective therapies, and a socioeconomic burden exceeding €40 billion annually in Europe. DISCOVER-ME will deliver the first clinically actionable, biologically validated stratification framework for ME/CFS. Through harmonised clinical phenotyping of 2,000 patients and multi-omics profiling of >900 samples from five European biobanks, the project will identify, validate, and prioritise biomarkers across (epi)genetic, immune, metabolic, neuroendocrine, and vascular domains. This large-scale, reproducible approach overcomes decades of fragmented, underpowered studies that have stalled progress. Three innovations set DISCOVER-ME apart:
2026-02-26

Best of luck to ME Support Northern Ireland with this new departure. I encourage everyone in Northern Ireland to make contact with this group. I have known Antoinette and her sister Jeanette for around 2 decades

belfastmedia.com/milestone-for

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

First paid staff member will see ME Support reach more people
Conor McParland
February 07, 2026 10:36

photo with caption NEW ROLE: Mary Mernagh, Alana Isom and Antoinette Christie from ME Support

A VOLUNTARY-led organisation dedicated to helping people who suffer from Myalgic Encephalomyelitis (ME) has reached a milestone with their first paid staff post.

ME Support Northern Ireland was founded by Antoinette Christie in 2004, following her son David's diagnosis with severe ME at the age of 11. It became clear at the time that there was little in the way of advice, support and treatment for people with ME and support for their careers.
2026-02-26

"Welcome to the 125th edition of the Research Digest...spanning biological mechanisms, lived experience, and illness trajectories."

emerge.org.au/researchdigest/r

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

2:00 pm
February 26, 2026
Research Digest | Issue 125
Print Friendly, PDF & Email
Welcome to the 125th edition of the Research Digest. This month’s collection reflects the continued strengthening of the evidence base across ME/CFS and related conditions, spanning biological mechanisms, lived experience, and illness trajectories. Together, the featured work reinforces the complex, multisystem nature of ME/CFS, the significant impacts on those most severely affected, and the growing momentum toward clearer biological understanding and improved recognition.
2026-02-26

From 🇩🇪

ICD-10 Diagnoses prior to ME/CFS diagnosis in children and young people suggest potential early diagnostic indicators

nature.com/articles/s41598-026

Interesting topic. I prefer this paper to some by Peter White & Simon Wessely

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

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Abstract
To identify ICD-10-GM codes recorded in the year preceding a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) diagnosis, we conducted a 1:5 matched case–control study using statutory health insurance data of 6–27-year-olds with ME/CFS (ICD-10-GM: G93.3, 2020–2022). Cases (n = 6,077) were matched 1:5 to controls by birth year, sex, and postal code. ICD-10-GM codes from the preceding year were analyzed using multivariable conditional logistic regression, reporting odds ratios (OR) and 95% confidence intervals. Most cases were female and aged 18–27 years. Forty-four ICD-10-GM code classes were associated with increased and four with decreased odds, spanning 13 diagnostic chapters. Most associations were in chapters F (mental/behavioral disorders), R (respiratory diseases), and M (musculoskeletal disorders). Frequent conditions included fatigue, depression, pain disorders, and somatoform disorders (≥ 10% in cases; ORs 1.11–2.19. Rare diagnoses (≤ 1% prevalence), such as fibromyalgia (OR 2.08, 95% CI: 1.20–3.59) and mild cognitive impairment (2.93, 1.21–7.10), were strongly associated. Four COVID-19 or vaccination-related code classes were identified, with post-COVID-19 condition showing the highest OR (3.84, 2.97–4.98). Several ICD-10-GM codes, including COVID-19 related codes, were associated with later ME/CFS diagnoses.
2026-02-26

Auckland, New Zealand study that still needs #MEcfs participants:

Investigating alterations in the expression of small RNA molecules (miRNA) in ME/CFS (and Long Covid-ME/CFS)

More info
s4me.info/threads/news-from-ao

Please share widely

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

A participant in this study posted on FB today that the research team is still looking for more moderate / severe pwME/CFS. A limiting factor is that they need to be well enough to be able to get themselves to a blood collection point in Grafton close to Auckland City hospital. Once there apparently access is fairly easy and a parking spot can be arranged
2026-02-25

7/
Benefits of NG tube feeding include:

From:
"Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)"

anzmes.org.nz/wp-content/uploa

#SevereME #MEcfs #LongCovid #CFS #PwME

@longcovid @mecfs

Benefits of NG tube feeding include: 53 54 ● Ensures Adequate Nutrition : NG tube feeding provides a direct way to deliver essential nutrients, fluids, and medications, helping to maintain a healthy weight and prevent malnutrition. ● Reduces Swallowing Difficulties : For those with severe swalowing issues, NG tube feeding bypasses the need to swalow, making it easier to receive necessary nutrition.Minimizes Physical Strain : It reduces the physical strain associated with eating and drinking, which can be particularly beneficial for those with severe fatigue and limited physical endurance. ● Prevents Pressure Sores : By ensuring proper nutrition and hydration, NG tube feeding can help maintain skin integrity and reduce the risk of developing pressure sores due to prolonged immobility. ● Improves Quality of Life : Proper nutrition can help improve overa l wel-being, energy levels, and cognitive function, contributing to a better quality of life.  

Un Protocole Hospitalier pour les Cas les Plus Graves

peer.adalta.social/w/kqRH8K2ZT

2026-02-25

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From:
"Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)"

anzmes.org.nz/wp-content/uploa

#SevereME #MEcfs #LongCovid #CFS #PwME

@longcovid @mecfs

Actions to take:  ● It's crucial to work with a knowledgeable healthcare team who understands the complexities of severe ME/CFS. Connecting with a healthcare professional who does domiciliary visits can be particularly beneficial, as they can provide personalised care and reduce the need for hospital admissions. ● Nasogastric (NG) tube feeding may be used to manage severe gastrointestinal problems and increase overal food and water intake. This method ensures patients maintain adequate nutrition and hydration, which is particularly crucial for individuals with severe ME/CFS to help prevent further deterioration and lessen both physical and emotional stress. ● Use the NICE Clinical Guideline on ME/CFS to help assess if a patient meets the criteria for nutritional support.  It lists the nutritional problems which may be experienced by a person with severe ME/CFS. If oral intake is insufficient, consider medical nutritional support like gastric tube feeding or intravenous (IV) fluids early to prevent critical electrolyte imbalances. The NICE Guidelines suggests ‘Nutrition support for adults: oral nutrition support, enteral feeding and parenteral nutrition’ for any patients who are nutritiona ly compromised.
2026-02-25

MEA provide update from ME/CFS Biobank Steering Group

meassociation.org.uk/2026/02/u

Included are details of discussions on the DHSC Delivery Plan, Research Case Definition for ME/CFS, the Danny Altmann Rosetta Stone study, the Jackie Cliff HHV-6 and Electrophysiology studies as well as Caroline’s Retirement Plans.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

2026-02-24

5/

ED = Emergency Department

From:
"Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)"

anzmes.org.nz/wp-content/uploa

#SevereME #MEcfs #LongCovid #CFS #PwME

@longcovid @mecfs

Actions to take: ● The patient needs to be moved to a quiet area with low lighting, away from the smel of chemicals and alowed to lie down. Overwhelming stimuli (lights, sme ls, noises, movement) in the ED department, can significantly worsen a severely i l patient who is already experiencing sensory overload.  ● Patients are likely to benefit from timely administration of IV saline.43● Blood tests should be conducted promptly to assess any stressors which may be worsening the condition. ● Emergency department triage protocols need to include special considerations for people in the severe-very severe categories, in the event of an emergency. This includes: 1. Ask patient if they have an emergency care plan. 2. Check for alergies and sensitivities. 3. Check if there are medications they need to get on time to prevent further complications 4. Use aids such as bedpans, wheelchairs or troleys to conserve energy. 5. Prioritise access to a low stimulus environment with a bed. 6. Health professionals to be aware of the diagnosis and treat the patient accordingly . 7. Health Professionals to access evidence -based ME/CFS information or contact an ME/CFS specialist if possible . 8. Avoid unnecessary procedures or tests that could exacerbate symptoms.  

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