I have not yet read the full 8 page document by Solve M.E. but at first glance I think this document by #MEAction is better
Document from Solve M.E.
"Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest"
This PDF explains that PEM is NOT weakness, deconditioning, laziness, or aversion to exercise.
"PEM is the ongoing failure to recover."
My comment - Pacing & rest do help, but it can be difficult (symptoms fluctuate, unexpected tasks or problems, etc.). Keep expectations low. Not a cure!
"Solve Together Basics: A Walkthrough from the Participant's Perspective"
Wednesday, Oct. 4
11 am - noon Pacific
"Join Solve Senior Director of Research Leslie E. Phillips, PhD for a walkthrough of our new patient-centered data platform, Solve Together!
In this webinar, we’ll share information about joining the platform, share tips for maximizing built-in tools for participants, and answer your questions."
"Recommendations for schools and healthcare professionals supporting CYP [children and young people] with Long Covid (LC)"
Similar recommendations could be made with regard to ME/CFS
@longcovid #LongCovidKids #LongCovid #PwLC #postcovid #postcovid19 #LC #MEcfs #CFS #PwME #YPWME #YPWMEs #YPWC #YPWCs @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #COVIDBrain
Working on attention with layers and their order. I just added the spiders and gave color in the right places. Giving my best #brainfog
He añadido las arañas al dibujo de ayer y lo he coloreado para trabajar la atención: orden de capas y no confundir en la que estoy trabajando. Simple pero un gran esfuerzo #DisfuncionCognitiva
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire
The authors have developed a new questionnaire to measure the functional capacity in ME/CFS. It covers eight domains and activity types and queries how these affect a patient's ability to function and do other activities.
Here's the latest News in Brief from the Science for ME forum, a summary of news for the week starting September 25.
This 2 part summary includes news articles, research, advocacy, coming events, and more:
Richard Vallée ChatGPT response to:
"Are there incorrect facts in the [Oslo Chronic Fatigue Consortium] article? And what evidence supports the assertions made by the authors?"
Long read sequencing characterises a novel structural variant, revealing underactive AKR1C1 with overactive AKR1C2 as a possible cause of unexplained severe fatigue
Detailed genetic study of a patient with ME/CFS found a novel structural variant: "The DNA inversion appears to increase the expression of AKR1C2 while limiting AKR1C1 activity, resulting in a relative increase of inhibitory neurosteroids & impaired progesterone metabolism”
Bayesian Statistics Improves Biological Interpretability of Metabolomics Data from Human Cohorts
"We use metabolomics data from three independent human cohorts that studied plasma signatures of subjects with [ME/CFS)]."
Differences found included compounds related to diet and medication in people with ME/CFS, and (contd)”
There has been an influx onto b l u e s k y in the last few days probably largely thanks to Julie Rehmeyer's initiative. I've reached 250 followers in 3 days.
Her latest update today: "Morning report: 1100 codes now in the hands of the chronic illness community!"
@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
Rosie and Me and Long Covid
Or: How I Stopped Vacuuming and Learned to Love the Roomba
While most of us are too young to have been around for the original Rosie the Riveter posters from WWII, I bet many of you have seen them and are old enough to remember Rosie (or Rosey in season 1) the XB-500 Robot from The Jetsons in the 1960s. While she was a typical (and by today’s standards, offensive) cartoon caricature and stereotype of a 1950s era Brooklyn domestic “maid”, she also served as the first introduction to the idea of household robots for many of us born in the 1960s and watching reruns of The Jetsons.
So, when we bought our first household robot recently from iRobot, my spouse insisted we name it Rosie. But this story really is not about the Jetsons. It’s about our Roomba i4+ and how it has made my life significantly better.
I live with my spouse and our aging dog in a somewhat cluttered house that needs some serious renovations. We were lucky if one of us found the time and energy to vacuum once a week, and dog fur and dander has been an ongoing problem. When I was healthy, this wasn’t a huge issue. Since getting long covid however, vacuuming became one of those chores that wore me out. Weekly vacuuming became monthly. And indoor air quality declined as you can imagine.
So, I finally broke down and bought a vacuuming robot. Rosie has changed my life for the better. I started with just doing the floor in our bedroom. This forced us to declutter the bedroom. And suddenly, after a few days, there were no longer dust coodles under the bed. There was no longer an invisible rain of pet dander particles. Rather than declutter the rest of the house, I just pushed all the clutter into one big pile to be sorted through and let Rosie have at the house.
For the first time in my adult life, I live in a space with clean carpets and clean floors. The dog is not thrilled by Rosie, but he puts up with her, even when she pushes his toys around the living room.
I can breathe better without the dust. The house is clean enough now that I was able to get an air purifier for the living room to filter the air even more. And the pile of clutter is slowly getting smaller, so Rosie can vacuum more and more of the living room.
I chose the i4+ because of a recommendation from WireCutter and it seems like a good compromise unit. It has enough of the mapping and cleaning features of the newest units to work really well (especially the auto-emptying feature!) but is much less expensive than the newest models. Don’t get me wrong, this is still an investment, but it cost less than my CPAP machine did, and has improved my health at least as much.
If you buy one, be sure to get extra bags for the base unit (I fill one in about a month as it packs the dirt and pet fur into that bag pretty tightly) and a replenishment kit (3 HE filters, 3 edge brushes, and a set of replacement rollers).
While I write this, Rosie is vacuuming around and under my chair, and Digby is perched on the stairs avoiding her. Thanks, Rosie.
ME Association Statement
Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!
"This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised."
"Anthony Fauci on becoming the ‘devil’ and a warning for his successor"
Interview with Anthony Fauci, former head of the National Institute of Allergy and Infectious Diseases (NIAID). He mentions "myalgic encephalitis/chronic fatigue syndrome" (sic) briefly.
From David Tuller DrPH:
David Putrino & Prof Akiko Iwasak published an important study in Nature reporting differences in multiple immune-related blood parameters between those with and without long Covid. Dr Putrino & I recently spoke about the findings:
A research project (Tjenesten og Meg) on ME patient's meeting with the health care services has ended after five years. Results were presented at a seminar this week.
A short report with a summary of the project was released and several academic publications are on their way. In short the health care services are not offering useful measures for this patient group, and even lead to deterioration.
ZonMw, Organisation for Health Research and Development in the Netherlands has published a short update on the ME/CFS program. Sjaak de Gouw will be the new chair of the program.
Google English translation:
A research project on ME/CFS and mitochondrial function has received £147000 in funding from Action for ME. The project will try to identify factors in the blood of patients that may be responsible for disturbing mitochondrial function.
The German Federal Ministry of Education and Research (BMBF) has published a new call '"to promote interdisciplinary collaborations to research the pathomechanisms of #myalgicencephalomyelitis / #chronicfatiguesyndrome (ME/CFS)." The aim is to research the pathomechanisms of post-infectious ME/CFS in more detail.
Google English translation:
The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
Danish newspaper B.T. writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a"functional disorder" in Denmark, Morten was refused help and advised to go for a walk when he no longer was able to control his muscles or eat.
Google English translation:
via Richard Vallée:
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
Outdated hypothesis [from Oslo Chronic Fatigue Consortium] is presented as news by University of Oslo
Google English translation:
“Universities spread false information” [on the The Oslo Chronic Fatigue Consortium statement]
Google English translation:
GET proponents claim that harms from GET are from not doing it correctly but with Lighting Process there is a free for all about how one behaves after it. You are basically signalling you are not truly concerned about the safety of patients if you promote LP.
"a gradual and controlled approach to increasing activity is crucial for rehabilitation".
Chronic fatigue syndromes: real illnesses that people can recover from
There is nothing controlled or gradual about how you are supposed to behave after LP. The 2 approaches are diametrically different, you basically can't support both!
Boeing 747-8 Intercontinental: 605
Boeing 777-300ER: 550
Airbus A350-1000: 480
"Corona in den USA: Lage verschlechtert sich – Mediziner besorgt
Wöchentlich sterben in den USA 500 bis 600 Menschen an Corona. Ob die Variante Pirola schwerere Verläufe auslöst, ist noch offen."
The Norwegian Chief of Defence is married to Linn Therece Kristoffersen who suffers from ME, and has written an honest and moving opinion piece in a medical newspaper about having to adjust to a very different life. He calls those who are living with ME sufferers to get more involved with the cause, gain more knowledge and raise awareness.
Google English translation:
A respected ME activist Trish Davis has done a line by line critique of this [Oslo Chronic Fatigue Consortium] abstract here
(click link above rather than preview to go directly to the post)
A great initiative being organised by Julie Rehmeyer.
I'm on there already. I will probably give my codes to this initiative.
Incidentally, you can find my social media channels including on #bluesky here
#MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #neisvoid
Find headlines and links to further reading for the following topics:
News, articles and advocacy
Research news and commentary
& ME/CFS and Long Covid research
Über die Gratwanderung zwischen Diskriminierung und Aufklärung - und was wir als Unterstützende tun können:
Of these apps, though, I did find one that claims #HIPPA compliance: Wave Health. And its features look promising. I’ve only just downloaded it so I have no observations to share, let alone a review to offer.
I’m also trying out Heart Analyzer and WatchME.
The biggest hack needed, though, is in my head: learning to accept I have this #disability. After 3½ years it’s about time.
It turns out there are several apps in the #iOS App Store that claim to help. Most are too simple, years outdated, or merely replicate what Health app already does.
A few look promising, plugging into Health app & surfacing helpful info & making it easy to manually record symptoms, pain, mood…
But what’s disheartening is how many of these apps seem to be data-collection mills. Some even track you outside the app!
Always watch for the grift!
So I’ve been looking for health apps to help me stay on top of my stats & symptoms to better stay within my #MECFS limits & avoid repeatedly overdoing it & crashing & #PEM not only ending the day but limiting or outright wrecking days/weeks that follow.
Apple Health app is a great start, secure & private, but focused on able-bodied life. Other apps can record/read data it collects, governed by granular privacy permissions settings. Maybe there are apps out there that can help living w ME/CFS?…
I sent the journalist the following with regard to people with ME/CFS:
People made worse with Lightning Process with working links:
New pre-print from New Zealand:
"suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions"
From Action for M.E.:
"This morning, our CEO, Sonya Chowdhury, appeared on BBC Radio Leeds demystifying ME/CFS [and] emphasising the wide range of symptoms & levels of severity. She also discussed the DecodeME study, providing details on how to take part, and urging people with ME to participate ahead of the closing date."
(quote expands hashtags and user names)
Sign up: https://www.decodeme.org.uk/portal/
Must have an ME/CFS diagnosis, age 16+, live in UK
This journalist has also now told me they would be interested in hearing of people with #LongCovid made worse by other programs that are somewhat similar e.g. Gupta. I talked to them for 20 minutes yesterday. An interesting & important project
Anyone know of any stories of people with #LongCovid who were made worse by the Lightning Process? A journalist is looking at this issue. I shared with them some stories of people with ME/CFS in this scenario
Medical Education from the Bateman Horne Center:
"The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS"
Educating healthcare providers, medical students, patients, and caregivers
Keynote Speaker: Lucinda Bateman, MD
Monday, November 6
Noon to 4 pm Eastern Time
In person and virtual attendance options
Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest
A shorter version of this was in their latest e-newsletter
Many doctors don’t know how severely these conditions escalate — millions of us are left untreated, then end up severely more disabled and needing more serious and complex surgeries #MEspine #pwME #POTS #MillionsMissing #LongCovid #MCAS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
Neglected tethered cord syndrome #TCS caused a lumbar herniation, scoliosis, multiple herniated cervical discs, stenosis, bone spurs, degenerative disc disease, nerve damage, craniocervical instability #CCI
I may have to get neck neurosurgery too so please give what you can! #EDS #MESpine #pwME #MECFS #LongCovid #MillionsMissing #MCAS #POTS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
I need a tethered cord release with lumbar disecotomy — doctors in Nebraska, Georgia, Iowa didn’t help (or even look) so I must see the $$ #EDS tethered cord expert and her colleague in Rhode Island
#TCS has been disabling me since birth #MedTwitter #pwME #MCAS #MECFS #POTS #Mito #LongCovid #MEspine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
I signed saying: The 2019 review is fatally flawed. See “Problems with the amended version" by Michiel Tack https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/detailed-comment/en?messageId=266353165# for a carefully argued, well-referenced critique which built on earlier critiques by Robert “Bob” Courtney and myself.
Thanks very much to everyone who has gone to
https://www.paypal.com/fundraiser/set-favorite-charity & searched for Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association . We've just received €75 more through this scheme (presumably mostly from the competition) for which we are very grateful👍👏
#MEAction is asking folks who have ME / Long Covid to take action to spread the word:
- If you sent a pillowcase for the Millions Missing demonstration re-share it on social media and say why you wanted to tell your story.
- Share the #MEAction site on your social media, say what Millions Missing has meant to you.
- If you see a Millions Missing photo with a news story add a comment to explain more about the photo.
Email from #MEAction
"Exciting news!! We have created a Home of the Millions Missing where we showcase our historical movement for ME.
We continue to see photos of our Millions Missing demonstrations on the National Mall and in front of the White House circulate throughout the media, and we want to make sure the world knows the full story of ME behind those protests!"
Full email here:
Massachusetts ME/CFS and FM Annual Event
"ME/CFS: Changing the Narrative"
October 28, 1-3 PM Eastern Time (on Zoom)
Guest Speaker: Ed Yong
Fee is $10 for non-members
Downside of today's internet install; the tech worker seemed *so* offended when I asked if he could wear a mask since I'm immunocompromised/chronically ill and didn't seem to understand why he should mask up. In the end he begrudgingly put one on but asked me to leave while he worked since he thought he'd catch my chronic illness🤔 #ChronicIllness #MECFS
UK #DecodeME recruitment ending on November 15
"...we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS.."