Lmst

Definitely not a recommendation

Interpretation bias modification (CBM-I) for fatigue in long term health conditions-A feasibility study

https://www.sciencedirect.com/science/article/abs/pii/S0005796725002396

Biological reasons for most of the fatigue in conditions like ME/CFS (connected to PEM) need to be understood better

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

Comments welcomed in reply to this query to us

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

A woman (from Ireland) has asked me the following question and has given me permission to share it to see what comments come in. -- Hi I am wondering if I could get some advice regarding a doctors visit please . I am currently bedbound which I have explained to my gp but they are refusing to give me my prescription unless I go into the clinic to see them in person . I am physically not able and scared it will be detrimental to my already very poor health . Any advice would be greatly appreciated.

I found these results for a large treatment survey when clearing out some old files.

From a major ME Association survey published in 2010

NB: I have zero confidence in positive testimonials from people who have done Lightning Process. You are hypnotised for 3 days and then are supposed to say you are well. I also have very little faith in testimonials from people who have done Reverse Therapy.

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

Affects on symptoms of 25 therapies tried by respondents –
sorted by the percentage of people who IMPROVED
PACING 2137 11.6% 59.6% 24.1% 3.5% 1.2% 71.2%
MEDITATION OR RELAXATION
TECHNIQUES 1675 6.1% 47.6% 44.3% 1.6% 0.4% 53.7%
PERRIN TECHNIQUE 115 13.9% 37.4% 37.4% 7.0% 4.3% 51.3%
ALLERGY TREATMENTS 686 9.5% 41.7% 45.2% 2.2% 1.5% 51.2%
OSTEOPATHY/
CHIROPRACTIC 774 9.8% 41.1% 33.3% 10.1% 5.7% 50.9%
MASSAGE 1037 5.4% 43.9% 31.3% 12.7% 6.7% 49.3%
LIGHTNING PROCESS 101 25.7% 18.8% 34.7% 7.9% 12.9% 44.6%
CORTICOSTEROID
eg HYDROCORTISONE 323 10.5% 32.5% 35.3% 10.8% 10.8% 43.0%
ADVICE (to help
to cope 2147 3.3% 39.5% 50.9% 3.7% 2.6% 42.8%
HYDROTHERAPY 275 4.0% 37.5% 32.0% 13.5% 13.1% 41.5%
THYROXINE 414 8.7% 30.4% 50.0% 6.0% 4.8% 39.1%
YOGA 812 4.2% 34.9% 32.9% 20.8% 7.3% 39.0%
MODAFINIL/PROVIGIL 81 14.8% 22.2% 33.3% 16.0% 13.6% 37.0%
EICOSAPENTAENOIC AID
(EPA) OMEGA 3 OIL 1217 3.2% 33.1% 59.7% 2.9% 1.1% 36.3%
VITAMINS AND
SUPPLEMENTS 2370 3.7% 31.9% 61.9% 1.8% 0.8% 35.5%
L CARNITINE 318 2.8% 28.0% 62.9% 3.8% 2.5% 30.8%
PHYSIOTHERAPY 862 3.5% 27.0% 36.7% 17.2% 15.7% 30.5%
REVERSE THERAPY 107 8.4% 21.5% 45.8% 16.8% 7.5% 29.9%
HOMEOPATHY 1100 5.5% 24.4% 59.9% 7.1% 3.2% 29.8%
COUNSELLING
(other than CBT) 984 2.6% 26.8% 60.1% 6.1% 4.4% 29.5%
EVENING PRIMROSE OIL 1231 2.6% 25.8% 66.3% 3.7% 1.5% 28.4%
COGNITIVE BEHAVIOUR
THERAPY (CBT) 997 2.8% 23.1% 54.6% 11.6% 7.9% 25.9%
INOSINE PRANOBEX/
IMUNOVIR 62 8.1% 17.7% 50.0% 16.1% 8.1% 25.8%
(GET) 906 3.4% 18.7% 21.4% 23.4% 33.1% 22.1%

2/

We have just sold out of one of the sets and only have one pack left for 2 of the sets; we also only have 2 packs left for 2 of the other sets.

#MEcfs #PwME
@mecfs

Uncertainties of living with Chronic Fatigue Syndrome: barriers to treatment and its consequences

https://www.tandfonline.com/doi/full/10.1080/14635240.2025.2588191

Screenshot from latest Science for ME weekly update

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

Uncertainties of living with Chronic Fatigue Syndrome: barriers to treatment and its consequences — Gopika Surendran and Tony P Jose
"This study aims to explore the obstacles encountered during the treatment process, their effects on daily life, and the future concerns of individuals with CFS, analyzed through the lens of Miranda Fricker’s concept of epistemic injustice."

2/

"This question presented a list of other common symptoms found in ME/CFS. Respondents were asked to select all that had ever applied to them – choosing whether they were a ‘major’ or a ‘minor’ problem"

#PwME #CFS
#mecfs
@mecfs

I found these results for a large symptom survey (answered Question: 3663) when clearing out some old files.

From a major ME Association survey published in 2010

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

1/

The most common symptoms – were they MAJOR or MINOR to you?
Major problem Minor problem Rating average of combined
Major and Minor
Feeling tired on waking up 91% 7% 0.95
Feeling ill for several days
after minor exertion 88% 9% 0.93
General malaise that varies
through day 82% 13% 0.88
Poor concentration and
short-term memory 73% 24% 0.85
Muscle pain 70% 25% 0.82
Severe muscle weakness
after minor exertion 72% 21% 0.82
Inability to cope with temperature
changes (or night sweats) 63% 28% 0.76
Aching joints without swelling
or redness 60% 28% 0.74
Increased sensitivity to light
and/or sound 54% 35% 0.71
Problems remembering names
of people and objects 52% 38% 0.71
Headaches of type not
previously experienced 51% 35% 0.69
Irritable bowel problems 52% 32% 0.68
Dizziness or feeling faint on
standing (postural hypotension) 45% 42% 0.66
Problems with balance 38% 48% 0.61
Recurrent sore throats and
enlarged glands 37% 48% 0.61
Sleeping in the day rather
than at night 40% 40% 0.60
Alcohol intolerance 38% 38% 0.57
Sensory changes, eg tingling or
abnormal skin sensations 33% 46% 0.56
Twitching of muscles or eyelids 28% 54% 0.55
New allergies 30% 40% 0.50
Difficulty in finding way about 17% 50% 0.42
Other 10% 4% 0.12
Answered Question: 3663

UK:
Transcript for 1-hour Myalgic Encephalomyelitis debate in Westminster Hall (UK Parliament) on Wednesday 19 November 2025 led by @tess

https://hansard.parliament.uk/commons/2025-11-19/debates/2CF5B027-60AF-4031-B6B1-A2909CF6A745/MyalgicEncephalomyelitis

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

Social gatherings in Cork, Dublin 1, Kilkenny & Limerick (Irish ME Trust)

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

Have a Snack on ME
Our next social gatherings will take place in CORK, LIMERICK, DUBLIN & KILKENNY. Full details as follows:
CORK
Barry’s of Douglas, Bar & Restaurant, Douglas, Cork.
Monday 24th November - Time – 12.00pm (organised by Ashling) LIMERICK The Strand Hotel - Ennis Road, Limerick Wednesday 26th November - Time – 12.00pm (organised by Sarah) DUBLIN Leonardo Hotel (formerly Jury’s Inn) Parnell Street, Dublin 1 Wednesday 26th November - Time – 2.00pm (organised by Joan) KILKENNY Bistro Bar, Kilkenny River Court Hotel The Bridge John Street, Kilkenny, Wednesday 26th November - Time – 2.00pm (organised by Ailish) All are Welcome If anybody is interested in helping to arrange further locations, please contact info@imet.ie

6/
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

https://www.sciencedirect.com/science/article/pii/S0277953625010974

Screenshot from latest Science for ME weekly update

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

Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome — Nezamdoust and Ruel
"Our findings reveal that the experiences of severe ME/CFS extend beyond the devastating physical symptoms to encompass a broader landscape of emotional, social, and institutional hardship. The condition’s contested nature fundamentally shapes how individuals are treated and understood, resulting in a layered form of marginalization. Participants experience widespread disbelief, social exclusion, medical neglect, and disability rejection."

The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction

https://www.mdpi.com/2673-8856/5/4/53

Screenshot from latest Science for ME weekly update

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

The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction — Elremaly et al.
Review. "We explore how nuclear and mitochondrial DNA influence disease risk, symptom manifestation, and cellular dysregulation, with particular focus on genetic variants, mitochondrial bioenergetics, epigenetic modifications, and transposable element activation."

From Austria:

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.mdpi.com/2075-4418/15/22/2828

Screenshot from latest Science for ME weekly update

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

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al.
"our ﬁndings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."

M.E. = Myalgic Encephalomyelitis

ME Essential is the magazine for members of the (UK) ME Association

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

5% ME cartoon: looking over a garden fence, talking to neighbour
95% M.E. cartoon: lying in bed

Thank you to John Simpson for sending his
super drawing which perfectly portrays
ME/CFS and what the outside world sees
and doesn't see. John commented in his email "I have no claim to any artistic talent..." Well, John, I beg to differ!
Caroline Cavey Editor
ME ESSENTIAL WINTER 2024

(UK) Recording of Westminster Hall debate: "Government support for people with myalgic encephalomyelitis" (i.e. in the Houses of Parliament)

https://www.parliamentlive.tv/Event/Index/5f8f9868-1dd6-4fc6-92c9-ad4666fe4096

This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social

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

Westminster Hall
Wednesday 19 November 2025 Meeting started at 2.30pm, ended 5.34pm
screenshot of video

It's not quite the end of 2025 yet but here's a summary of what #MEAction did this year:

"#MEAction's Top 10 Accomplishments of 2025"

https://www.meaction.net/post/meaction-s-top-10-accomplishments-of-2025

#MEcfs #PwME #Advocacy #Activism

On #InternationalMensDay, some articles on men & #MyalgicEncephalomyelitis

Not So Macho: A male perspective on M.E. https://www.mediafire.com/file/reaem7f50x0a5ea/IA+50+Not+so+Macho.pdf

Men with #CFS https://www.mediafire.com/file/7mr6eolnu3mtwwn/men_with_CFS.pdf

'Men & M.E.' booklet (2007) Intro: https://www.mediafire.com/file/h14bjcfkaze31dz/Action+for+M.E..html

Booklet: https://www.mediafire.com/file/of6evy6g7ngwl5v/Men+and+ME+booklet.pdf

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #InternationalMensDay2025 #IMD2025

Photo of distressed-looking man with his head in his hands

4/
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion

https://www.mcponline.org/article/S1535-9476(25)00566-3/fulltext

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

2nd International Conference: "scientific and clinical advances in Myalgic Encephalomyelitis and Long Covid"

https://aliancamillionsmissing.org/2-conferencia/en/oradores/
https://youtu.be/5BP5Fi9tZ4o
https://youtu.be/y92DnoMKXuk

Screenshot from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19

Portugal 2025 International Long Covid Conference
November 12–13, 2025, held in Porto, Portugal and online. To raise awareness, promote understanding, and stimulate dialogue among healthcare professionals, researchers, policymakers, patients, and advocates about ME/CFS, Long COVID, and other post-viral fatiguing illnesses.
Speakers | Video Day 1 | Video Day 2 | Thread

#Ireland

Our Christmas card page is now up https://irishmecfs.org/store

Wide selection: 18 packs with English or English & Irish verses

10% of gross amount goes to our research fund.

Shops don't get a cut so more goes to charity

Reposts welcomed

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

All profits from the Christmas cards go to the Irish ME/Chronic Fatigue Syndrome Association (an all-volunteer organisation) with a cartoon image including a Santa Claus and presents

From #MEAction -

"Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation?

We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving"

Bluesky thread with more images:

https://bsky.app/profile/meactnet.bsky.social/post/3m5waxkov4c2u

#MEcfs #PwME #Caregiver #Caregiving

#PwME

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