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@myalgicencephalomyelitiscfstom
Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070
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A Life Hidden: The Burden of Chronic Illness That I Rarely Talk About
Being ill is hard. What an obvious thing to say – and yet how often it goes unspoken. I’ve written about many aspects of life with long-te
Screenshot from latest Science for ME weekly update
Trial By Error: CFS “Recovery” Findings Might Be “Suppressed,” Says Report By David Tuller
By David Tuller, DrPH In the late 1980s, the UK and international health establishments began promoting a recovery narrative regarding what
A couple of extracts:
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"About two-thirds of the 75 subjects reported that they were now working as practitioners of mind-body interventions—a factor leading to an unknown amount of bias, whether conscious or not. With so many respondents having a professional and financial stake in affirming the benefits of these approaches, the body of testimonials should be viewed with a huge dose of skepticism."
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"Pretty much everyone I have interviewed with ME/CFS or any variation has told me they firmly believed they would recover, and—especially during the early years—experimented with all sorts of interventions they heard or read about, no matter how off-the-wall they sounded. After failed attempts at CBT and GET, many sought solutions “outside a medical framework” and developed “self-determination in the face of adversity.” Many even pursued “mind-body knowledge” and zealously engaged with mind-body programs.
They just didn’t get better. In many cases, they got worse. They do not need to be told again that they would get better if only they did x, y and z."
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Comment from me:
Note there is also a big question mark about whether the people reporting recovery in this report were actually recovered. "Recovery" can be used in a wishy-washy way and it seems like this was the case here:
“The use of the term ‘recovery’ reflects its use by the community. As the purpose of this report is to reflect the subjective, social and cultural reality of participants’ accounts, medical criteria have not been applied to assess them. The experience of recovery and participants’ understanding of the meaning of the term is not uniform.”
“The more ill you become, the less care you receive” - Severe ME Inquiry Report
Article
A major new report from Action for ME and the 25% ME Group exposes the devastating reality facing people with severe and...
Report
“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’
Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experien
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From @itsaliceella on IG
Today is Severe M.E. Awareness day. A day that makes me feel such heavy grief, not only for what my life could have been like if I hadn’t got sick at 14, but for the millions of people who suffer around the world from this utterly devastating illness.
I had severe M.E. for several years as a teenager, and it put my entire life to a stop. I left school, and lay in bed for years, as friends went to college, and then uni, and went on to live their lives. I was completely bedbound, had a stairlift in the house, a commode next to my bed, and I was barely existing.
That’s the reality of Severe M.E.
It takes every single thing from you, and when you try and try to get better, the symptoms get worse and worse.
It is hell.
August 8th, marks the birthday of Sophia Mirza. She was the first person in the UK to have Myalgic Encephalomyelitis (ME) officially recorded as the cause of death.
Today honours those living with severe M.E. whom are living with disabling fatigue and a mariad of symptoms. Most are housebound, bedbound, and often living in complete darkness and silence, as they cannot even tolerate light or sound.
Please watch. Please share. This is ours - and so many others’ - reality. These stories deserve to be seen.
Tags of the wonderful people featured in the video part 1 (continued in comments) Fran @franhaddock_ Amy @amykatherrrine Armond @armond.needs.rest Lizzie @slaywithsparkle Elicia @its.me.elicia Megan @mindlesslymegan Mihaela @bloomanddot Kayli @wandering Lindsay @spoonfuloflindsay Chloe @chloeschronicles_of_illness Emily @thatgirlwithlongcovid_ Quella @quella_the_dizzy_octopus Fen @kutlongcovid Katie @katiecupcakelifewithme
From @dougieslifewithmecfs on IG: Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.
Severe ME Awareness Day
For severe ME day
From Mahli Quinn Art's "Severe and very severe ME comic"
ME Association Mahli Quinn Art Severe and very severe ME comic £3. A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
A third illustrated booklet by Mahli Quinn that will help to convey some of the worst aspects of living with severe and very severe ME. UK
For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
A third illustrated booklet by Mahli Quinn that will help to convey some of the worst aspects of living with severe and very severe ME. UK
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“I want to warn those who are working but barely getting by: do not ignore your symptoms, because you risk losing several levels of function. I pushed and ignored my symptoms to the point where I had nothing left. Pacing is so important”
From Recap: Support Group: Navigating Work Loss and Financial Stress
"Symptoms made worse due to physical or cognitive exertion in Myalgic Encephalomyelitis & Chronic Fatigue Syndrome"
The unusual method I use to help encourage me to rest 5-7 hours per day
I find it challenging to rest 5-7 hours a day, so I reward myself with food (I don’t get to eat it till I’m lying down where I plan to rest).
This seems to work well for me.
It does take discipline not to put up weight so I count calories/kJs*. But I have managed to keep my BMI within 1 unit of 20 for the last 7 years so think I have it under control.
I like lying outside so don’t need to bring food with me to rest outside. But a lot of the time, it’s not suitable to be outside in Irish weather.
Definitely wouldn’t suit a lot of people, and I’m sure some people will point out their problems with it, but seems to work for me to get the all-important rest to help me have fairly steady energy levels and not deteriorate. What do you do to help encourage yourself to rest?
*Generally for my dinner, these are just guesstimates
From @onelife_livedwell on IG:
Let’s talk about the unofficial evaluation that can determine belief, treatment, or accommodations. What’s being measured is legibility in the eyes of the system you’re dealing with.
From @onelife_livedwell on IG:
There is a particular kind of exhaustion that comes from living in the space between knowing something has changed in your body and waiting for the world around you to find language for it. For many people with energy-limiting and fluctuating conditions, the diagnostic journey is not a straight line but a long and often disorienting passage through normal labs, partial explanations, referrals, waiting rooms, symptom trackers, and includes self-doubt that begins to gather when your daily life no longer matches what the medical record can easily show. This is part of what people mean by the diagnostic odyssey, which is not just the search for a diagnosis, but also the invisible labor of translating patterns, crashes, thresholds, recovery time, brain fog, dizziness, pain, and lost capacity into a system that often recognizes things more easily when they are stable and measurable by existing processes. If this is where you are, or where someone you love is, I hope this phrase gives you a small place to stand and is a reminder that the journey has a name
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From @onelife_livedwell on IG:
The invisible illness tax is what happens when system limitations impact the people it serves. It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research. The invisible illness tax is real, but so is the growing body of research, education, and education working to reform it.
Articles specifically discussing ME/CFS and long Covid in children and young people can be useful.
This 5-page article is from the Bateman Horne Center Clinical Care Guide