Discover and read the best of Twitter Threads about #me

Most recents (24)

“There is quite convincing documentation that supports that the MEtabolic energy turnover is disturbed by #ME. By metabolic energy MEtabolism we mean the biochemical processes in the body, that transform, distribute and utilize energy sources in the food👇🏻 forskersonen.no/cellebiologi-k…
“Oxygen is the most important single factor for the cells' production of the important energy molecule ATP. The oxygen consumption of the muscle cells increases dramatically during physical work, but it has a limit. As the oxygen supply becomes insufficient, 👇🏻 #PwME #MEcfs Image
the production of lactic acid (lactate) increases, and then the working capacity of the muscle will rapidly decrease.” #MEcfs #PwME #ImmunoMEtabolism #ATP #KrebsCycle ImageImageImageImage
Read 21 tweets
Recently, The National Institute for Health and Care Excellence (NICE) found pseudoscientific and expensive 'The Lightning Process' useless for #ME.

The decision provoked quite a reaction from Live Landmark (Lightning Process 'advanced' member) and her supporters. 1/
Context: Lightning Process is a trademarked 3-day 'miracle' course developed by a self-declared spiritual healer and sold to patients with chronic illnesses.

The business plan, recruitment of coaches and royalty payment to the founder, is often compared to pyramid schemes. 2/
Live Landmark bought an expensive license from Phil Parker and brought the trademarked product to Norway. Since then, she has made millions on the course and hired more coaches.

A percentage of the money goes to Phil Parker - a former 'spiritual healer'. 3/
Read 4 tweets
This thread =about #ME charities position on the need for more research & funding. I had a “problematic” discussion with the MEA on this last week, not just bec we disagreed! but their position “seems” afaiu at odds with what many in #pwME want/need or are they right? #mecfs
2) An Meruk report a few yrs ago seemed to agree with MPs calling for action as lack of progress, suffering & economic cost was unacceptable meresearch.org.uk/commons-debate…

They said the ministers response to calls in HoC debate for more research “was disappointing in the extreme“
3)Stephen brine then minister said “As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research &the MRC through UK Research a&Innovation. Together, the NIHR&MRC welcome high-quality applications for”
Read 18 tweets
Interesting finding from my reading of a 1993 CIBA conference on ME/CFS including a range of researchers in early 90s. The role of viruses was largely dismissed but 1 virologist raised concerns about the role of viruses that can clearly cause fatigue and immune changes.
A black box in ME/CFS from 1990s has been virologists uncertain "how" viruses cause fatigue in eg mono-EBV natural history studies show 10% of EBV sufferers may experience prolonged fatigue. Today we could think LongCovid. Psychiatrists theorised 'reasons' for fatigue continuing.
We do not know how or why one patient suffers prolonged fatigue and others do not following #Covid-19, or #ME/CFS, or EBV, our medical technology is not good enough to detect why at a cellular level. What do know is viruses and bacteria eg Lyme, Bart, can trigger chronic illness.
Read 6 tweets
💥#BREAKING Rotterdam
Er wordt 'Gericht Geschoten' in Rotterdam.

Door @politie op mensen ingereden, kreeg ik door. Dodelijk slachtoffer, slagader geraakt #Rotterdam #2g

Mensen zijn het terecht zat. NEE tegen 2G protesten. #coronatoegangsbewijs #vuurwerk #vuurwerkverbod
#Rotterdam gericht ... geschoten ? #politie auto in de brand. En belasten de zorg.

1 dode waarschijnlijk. Cc: @nos @RTLnieuws @sbs6

De mensen zijn #coronapas en tweedeling zat met #qrcode #2gregel NEE tegen 2G protesten #Rotterdam

Netherlands - shots fired point blank Police
💥#Rotterdam LIVE NU.
Link - video in verzet
NEE tgn #2g protesten 👇

Nu omgeroepen "U dient zich te verwijderen van de Coolsingel" - #rellen in Rotterdam, mogelijk gericht geschoten met dode. #RutteMoetWeg

ME probeert Coolsingel terug te krijgen.
👇
m.facebook.com/VideoInVerzet/…
Read 7 tweets
For this new @polybioRF podcast I interviewed Dr. Liisa Selin, professor of pathology at the University of Massachusetts Medical School. Listen on an App like Spotify (open.spotify.com/episode/5rdB0G…) or watch on youtube ()
2/ Liisa talks about her work as a #viral immunologist, and how her team recently got an NIH grant to study the role of viral infection and T-cell exhaustion in #ME/CFS. She discusses existing data on the topic and how the research may also inform the #LongCovid disease process
3/ Liisa and team are fundraising to further extend their research to LongCovid. Donate here to support her efforts: classy.org/fundraiser/321…
Read 4 tweets
🧵 Veel mensen zijn covid-moe. Weer maatregelen, hoe nodig ook, voor niemand leuk. En geloof me, als ik even aan covid zou kunnen ontsnappen, dan zou ik dat doen. Dat kan alleen niet, want ik heb #LongCovid en het beheerst al 20 maanden mijn leven. 🪡 Lange draad #bearwithme
Al vroeg in de eerste golf kreeg ik covid en helaas ben ik nu nog net zo ziek. Voor covid was ik 32 jaar oud, fit en sportief. Ik werkte fulltime en vond m’n baan geweldig, daarnaast had ik een rijk sociaal leven. Nu verlaat ik amper het huis. Waar ik allemaal last van heb?
Tientallen symptomen die zo beperkend zijn dat ik het grootste deel van de dag moet liggen. Ik ben mijn baan kwijt en heb 30% van mijn inkomen ingeleverd. Mijn sociale leven is vrijwel niet bestaand. Veel vrienden heb ik nooit meer gezien, energie om ze te spreken ontbreekt.
Read 49 tweets
I’d like to take this opportunity while #ME #CFS is in all major news outlets today, to recognise the role our media have In peddling false narratives of ‘tired’ people... @BBCNews @Telegraph @guardian @thetimes chose to run these images 👇🏼

I’ve replaced with a little realism
This is @DafoeWhitney bed bound with #ME for years, and like myself, only leaves his room to attend hospital appointments via stretcher.
omf.ngo/a-powerful-mes…
This is Merryn Crofts. Merryn died at age 21, after years of neglect and frustration from disbelief within the medical profession. Cause of death: Severe #ME
inews.co.uk/news/real-life…
Read 5 tweets
Come Clean
2 Simple words, "I'm Sorry" ..

Sorry = YOU ALL get what you want & the SWITCH gets #FLIPped .

Why it took this long is beyond me.

He who is free of sin, cast the first stone.
Do you know how many stones have been thrown?
I #REMEMBER EVERYTHING !
Been Looking, for A long time ..
Just as the ones I Love looked at me.

Looking glass sure seems like A type of "Stalking" in A way, No? ..

Only difference between the good guys & the bad guys looking through the glass is, evil uses it against humanity & the light (REAL LIGHT)
does it to help guide or TEACH humanity how yo change their ways doing things the right way & not the corrupt cruel ways so many have chosen to act ..

EVERYTHING was seen.
Read 10 tweets
With the #NICE roundtable happening on Monday to discuss concerns over the updated #ME guidelines, let me address a key concern about removing GET - that there would be a "reduction in services".

Here's what a specialist ME service could do without GET.../1
Take basic objective measurements, like HR and BP, using them in tests like the NASA Lean test to screen for orthostatic intolerances and refer on as required /2
batemanhornecenter.org/wp-content/upl…
Use Heart Rate monitors to take 2 weeks of baseline data alongside an activity diary, then use that data to;
a) identify stressors (& provide adaptive aids to modify these)
b) re-organise activities to allow for restorative rest
Read 13 tweets
大変お世話になっている #筋痛性脳脊髄炎/#慢性疲労症候群 の専門の先生に、#ME/#CFS の診断について伺いました。
ME/CFSの診断基準のゴールデンスタンダードはカナダ基準とされていますが、その他にもいくつもあり、日本では研究班による診断基準試案 fuksi-kagk-u.ac.jp/guide/efforts/… があるのみです。
さらに、実際にME/CFSの専門外来を受診された #コロナ後遺症 患者さんたちのお話や、従来のME/CFS患者さんたちの話を伺うと、私が信頼している先生方も必ずしも診断基準通りに診断されていない様子。そのような混乱した状態にあるのに、ポッと出の私のようなものが診断を乱発していいはずがないという
思いがあります。今まで2800人以上の #コロナ後遺症 の患者さんたちを診察させていただいていますが、当然ながら「コロナ後遺症=ME/CFS」ではありません。「コロナ後遺症の一部がME/CFSに移行する」というのが正しい理解と思います。
ME/CFSは「症候群」ですから、本来は様々なサブグループに
Read 6 tweets
In our recent review on #LongCovid/PASC we bring up the possibility that dysbiosis or imbalance of host #microbiome communities (in ecosytems such as the gut, lungs, or oral cavity) might contribute to at least some LongCovid symptoms: frontiersin.org/articles/10.33…
2/ More specifically immune dysregulation driven by #SARS-CoV-2 might allow pathobionts (bacteria capable of both commensal + virulent acitivty) in the gut, mouth, or other body sites to collectively shift towards a state of imbalance + pro-inflammatory gene/metabolite expression
3/ Conversely, b/c composition + activity of the microbiome can influence host susceptibility and ongoing control of #viral pathogens, exisiting microbiome dysbiosis in a range of body sites may serve as a form of predisposition to LongCovid
Read 11 tweets
It’s mind-boggling that someone like Per Fink has control over #ME and #LongCovid treatment in Denmark.

He denies bio research, refers to debunked PACE trial and has seriously harmed patients (Karina case). The man should not have any influence at all. 1/4
His horror clinic is literally called: “Research Clinic for Functional Disorders and Psychosomatics“. Their outdated view on M.E. is right there in the name.

Of course he sent complaints to NICE. He based his entire clinic on something NICE has found to be nonscientific. 2/4
M.E. is a confirmed physical illness. Everyone can look that up easily. In 2019 it was finally decided politically in Denmark too. It was decided that Per Fink should have nothing to do with M.E.

Still, nobody cares about that and they just continue their pseudo work. 3/4
Read 7 tweets
I’ve seen some people tweet that #coronaviruses might not be capable of persistence. But over the past decades, coronavirus RNA/protein has been identified in a range of human samples after acute illness, and sometimes connected to chronic disease
2/ For example, this team found coronavirus RNA and/or antigen in both plaque + non-plaque areas of brainstem, cortex, and spinal cord samples obtained from patients with MS: ncbi.nlm.nih.gov/pmc/articles/P… Image
3/ This team identified a range of DNA/RNA viruses in tissue samples obtained from healthy humans at autopsy. Coronavirus 229-E was found in brain, thyroid, heart, lung, stomach, adrenal gland, skin and blood samples: bmcbiol.biomedcentral.com/articles/10.11… Image
Read 11 tweets
Draadje. Pleidooi voor het luisteren naar de patiënt, nav ervaringsverhaal.
Toen ik vroeg in de eerste golf ziek werd (ik was toen 32 jaar en voorheen fit en gezond) dacht men dat ik snel beter zou zijn. covid zou een longvirus zijn en enkel gevaarlijk voor kwetsbaren en ouderen.
2 april kwam ik op de spoedeisende hulp terecht met een hoge hartslag en benauwdheid. Ik was toen al zes weken ziek. Ik werd naar huis gestuurd met een puffer en kreeg te horen dat ik snel beter zou zijn. Zo lang ziek op mijn leeftijd, daar hadden ze nog nooit van gehoord.
De hartkloppingen en hoge hartslag hielden aan, samen met talloze andere symptomen zoals tintelingen, extreme hoofdpijn, een opgejaagd gevoel en spierspasmes. De cardioloog concludeerde in mei dat ik gezond was. Ze had nog nooit van m’n klachten gehoord. Ik zou snel beter worden.
Read 27 tweets
@OxMEDiscovery
1/7
From the Morten Group at Oxford:

"Our ME/CFS Raman diagnostic paper is just back from review. They like it! But we need to run a further set of expts with new blood samples. Really important we get the PhD funded in order to collect new bloods."
2/7
"In this proposal we will explore this association in detail in ME/CFS, Chronic Lyme and Long Covid examining not only the gut but also the currently unexplored blood biome."
3/7
"We propose that the blood biome and its association with a leaky gut could be a pivotal factor in a number of chronic conditions including #ME/cfs, #LymeDisease and #Long covid."
Read 8 tweets
Als #longcovid patiënt doe ik mee aan het ‘LongCOVID-onderzoek’ van het @RIVM. Drie maanden terug heb ik de eerste vragenlijst ingevuld, vandaag de tweede. Ik maak zorgen om de kwaliteit van dit onderzoek.
Één van de meest kenmerkende long covid symptomen is een ontregeld autonoom zenuwstelsel. Bij mij is dat inmiddels #dysautonomie (POTS). Het sympathische gedeelte is overactief, waardoor patiënten last krijgen van spierspanningen, een opgejaagd gevoel, slapeloosheid en soms zelfs
het gevoel van paniekaanvallen zonder mentale trigger. Ontspannen is moeilijk, want het parasymphatische zenuwstelsel krijgt minder de kans. Dit resulteert in aangespannen spieren, nekpijn, spanningshoofdpijn, een opeengeklemde kaak en het gevoel van adrenaline door je lijf.
Read 18 tweets
Getting some DMs whether #stock #market is going to crash.
Remember a few things.
#Bullmarket in midway when person like me without any #financialeducation / #stocks knowledge tweets regularly as expert!
When people R at fear of #Markets crash!
When everyone is putting (1/n)
Their #money into #LargeCap from #midandsmall #caps!

Sign of #impending #crash in #Markets :
People #invest in very high valuation stocks without any fundamentals!
#Deja_vu that bear market doesn't exist!
People feel to leave job as #Markets a better and regular place to (2/n)
#Earn!
People R buying #realestate as if there is no #Tomorrow!
#Ileterate people like #me feels they contol D #Markets!
#Asset #heavy #businesses R running #amok!
#bond #yield n #interest #rates all time high!
#Danger ⚡⚡⚡⚡⚡⚡⚡

U R on D verge of crash!
Read 3 tweets
1/6 The 11th-hour halt to publication of the #ME/CFS guideline has been so very difficult for the patient community. It's particularly hard that there's been so little clarity about why this has happened and what it will take to move forward. Imho...
nice.org.uk/news/article/n…
2/6 it might be useful for patients & professionals to consider how immense the ramifications of this guideline are. NHS management of medically unexplained symptoms is based on the CFS example & consensus that psych care works via CBT & GET. That consensus is now shattered...
3/6 NHS #LongCovid care is largely based on the CFS example, and many US "experts" rely on the CFS model to gaslight long covid patients in the media. US med textbooks also base their MUS training on the psych model of CFS from the UK. Do you see how huge this is?...
Read 6 tweets
Thread on @NICEComms decision of 17 August to pause publication of new guideline on "ME/CFS". This thread sets out my view on current legal position.
Like all public bodies, @NICEComms has a wide discretion in how it operates. However, when the decision to pause was made, the process had been completed, signed off and the final document had been distributed to stakeholders.
Thus far, @NICEComms has failed to provide any evidence of exceptional circumstances in order to justify or clarify its decision.
Read 18 tweets
The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5
meaction.net/2021/08/19/sig…
Due to the psychologisation of #MECFS after the scientifically flawed #PACEtrial, part funded by the #DWP btw. Not only has this caused medical abuse in patients with #ME (#MAIMES) its having a huge impact on the treatment & further investment of many other patient groups 2/5
From people living with #ChronicPain & #MUS to #Fibromyalgia & #LongCovid. There are literally #MillionsMissing globally & thousands of #Disabled #pwME & #SevereME in the UK who are desperate for their voices to be heard, represented, just taken seriously in many cases 3/5
Read 5 tweets
Those flights to THE ISLANDs, there's Video .,. I'm sure someone will leak the footage ...- I'm sure someone will leak the footage of what was happening ...-

All I can really say is, ALL OF WHAT HAS HAPPENED/HAPPENING is pretty much to try & cover it all up ... .

THE FARM
I Love this Sjate Video ....

[They] Thought putting bricks on the corner of all those streets would turn ALL OF YOU away from God .. [They] thought, because of ALL THIS TRUTH THAT WAS LEFT IN TIME BY TIME TRAVELERS for #ME, To share with all of you the TRUTH about the World that
Has been kept hidden from humanity, YOU ALL would #THINK (i) Was apart of [Their] sick bullshit! "Anons"/Humanity was A LOT smarter than [They] thought .....

By now, you should know EXACTLY #WHO [They] are .✍

EVERYTHING in life has been specifically CREATED for #ME to share
Read 19 tweets
“Even if shown to be beneficial (immunological) treatment is unlikely to be feasible on a wide scale because of cost.” – Michael Sharpe, 1991

30 years later these motives are still there, always.
“The use of extensive laboratory investigation may be psychologically harmful to the patient by reinforcing their beliefs about serious physical disease.” - Michael Sharpe.

We see this very same absurd narrative being used to suppress #LongCovid patients now.
More history of corruption:

"No doubt Sharpe’s concern over costs were due to his links with the medical insurance industry, including Unum Group formally known as UnumProvident. In 1994, Unum reported that no other disease surpassed the rate of increase of ME/CFS..."
Read 8 tweets
1/ @Karl_Lauterbach hat heute 2 Tweets mit Arbeiten zum Thema #LongCovid veröffentlicht, diesen:
@Karl_Lauterbach 2/ und diesen: . Beide Tweets legen nahe, dass eine Gefäß- und Gerinnungsstörung mit Entwicklung von oxidativem Stress Ursache von #LongCovid sein könnte. In beiden Tweets wird eine „unklare Prognose“, nach Infekt,bzw. die Gefährlichkeit von #COVID19 betont
@Karl_Lauterbach 3/ Doch was steht in den Studien wirklich drin? Ich habe es mal im Kapitel Pathogenese von #LongCovid unter dem Oberbegriff „Endothelopathie“ zusammengefasst: brainpainblog.org/2021/07/29/ide…. Für alle hier in a nutshell: Die erste Arbeit ist eine hämatologische Arbeit mit 50 Probanden…
Read 11 tweets

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