Discover and read the best of Twitter Threads about #mecfs

Most recents (24)

there is a whole 12-page "expose" on how horrible #mecfs patients are from the view of the researchers and scientists in the CBT/GET camp. It is horrendeous. They completely get to tell their narrative... 1/
and never get properly confronted by the fact that they are the _minority_ in the international ME field, their research is so poor it tells ut nothing, and the little their research tells us usually actually is the opposite of what they claim. 2/
They are in their own echo-chamber when it comes to their research. They only collaborate with and attend conferences with others having their same view. They never attend the largest conference for #mecfs, only the small ones sharing their hypotheses 3/
Read 12 tweets
@meganranney 1. Many post-Covid patients still feel exhausted after 60 days and haven't returned to their previous level of health. A small amount of exertion wipes them out for hours. This is known as Post-Exertional Malaise or PEM or crashing.
1/n
@meganranney 2. An unknown percentage of these patients may never recover and will go on to develop Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome. #MECFS
3. Support groups for thousands of these patients have already appeared on Facebook.
2/n
@meganranney 4. Numbers of patients with #MECFS could double in a few years, putting great stress on disability support.
5. There is no treatment for #MECFS. Rest and lifestyle management are key.
6. Very few doctors feel confident diagnosing, treating or counseling #MECFS patients.
3/n
Read 14 tweets
@TomKindlon Thanks for sharing this article, Tom. Our @4WorkWell group proposed a heart rate formula in 2010 that was evaluated in the study. The threshold was intended to help people with #MECFS avoid exceeding their heart rate at ventilatory anaerobic threshold. pubmed.ncbi.nlm.nih.gov/20185614/
@TomKindlon @4WorkWell I think it’s important to point out the equation we proposed was never intended to accurately predict heart rate at VAT. It was intended to slightly under-estimate heart rate at ventilatory anaerobic threshold. The thought was this underestimation would provide a safety margin.
@TomKindlon @4WorkWell The authors of the present study, very helpfully, provide us with some important subject-level data in Figure 1. These data can help us get an idea of whether the formula we proposed in 2010 actually underestimates the heart rate at lactic acid threshold, as originally intended.
Read 14 tweets
I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for 1-40 years. #MECFS
We (#pwme) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.
Yet––it is HEARTBREAKING to see some of the intense outpouring of compassion from doctors for these patients, the proactive (and appropriate) scientific curiosity.
Read 15 tweets
The “OMG, #COVID19 can cause long-term illness, possibly long-term disability, who knew such a horrible thing was possible?” articles stir in me so many mixed emotions.
I feel sorry for the people who are suffering from this and the uncertainty they face, especially those being gaslit by doctors or family members (apparently if you don’t snap back after two weeks, it’s “stress” or “anxiety”), or who are forced to go back to work too early.
I feel a sort of detached bemusement over how hard it is—for all of us—to pay attention to that which does not personally affect us, until it does. I have come to accept this as part of the human condition.
Read 14 tweets
#Thread for #MEAW2020

So it's #MEAwarenessDay #MEAwarenessWeek. That's the disease #MyalgicEncephalomyelitis if you don't know.

My Queen @NicolaCJeffery lives with this. We've been treating her for 15 months now at a cost of thousands of pounds, because the #NHS won't help 1/7
2/7 Or rather it will help, but only by telling the 250k+ people who live with #MEcfs in the UK that it's 'all in your head'.

Today was a milestone for Nic. We've now reduced her from 78 tablets & 9 oral solutions a day to 40 and 4.

I'm not sure many people really 'get it'
3/7 Can you imagine taking 78 tablets A DAY? That's what it's taken to try & get her better. But it's come at a huge cost.

It's been the hardest thing me & her have ever done & our lives have been HARD. #Lockdown? Hard? You've no idea. Some people helped with fundraising, so TY
Read 7 tweets
Chronic fatigue, bone pain, gastrointestinal symptoms, and ongoing cardiac, respiratory, and neurological symptoms are being experienced by COVID19 survivors after “recovery.”

nytimes.com/2020/05/10/wor…
COVID19 has been reminding me a lot of MCAS (mast cell activation syndrome) and these descriptions are very reminiscent of what those of us living with MCAS experience.

For many of us, the signs and symptoms never go away.

I hope that is not the case with COVID19 survivors.
In addition to something like #MCAS, there are chronic illnesses linked specifically to viral exposure.

Myalgic encephalomyelitis chronic fatigue syndrome features many of the signs and symptoms reported by COVID19 survivors:

#CFS #MECFS
Read 4 tweets
Mega Dump
HIV/AIDS+CF/ME Research

Manufacturing a crisis

ICU
5:5 LOUD & CLEAR
#UseDiscernment #ThinkForYourself
#TheGreatAwakeningWorldwide
The Chronic Fatigue Syndrome Epidemic Cover-up: How a Little Newspaper Solved the Biggest Scientific and Political Mystery of Our Time
amazon.com/dp/B0796CT24Q/…
The Chronic Fatigue Syndrome Epidemic Cover-up Volume Two: The Origins of Totalitarianism in Science and Medicine
amazon.com/dp/B07DNMGQTT/…
Read 54 tweets
(1/4) #MECFS is a multi-systemic disease where we are trying to put the pieces of a huge puzzle together. In the Network Analysis shown below Lysine plays a central role. Dr Ron Davis found high Lysine levels in #PwME.
(2/4) Next step is to try and find why this is so. There are a number of concepts (nodes) next to Lysine. Some of them are expected to be there. Others (such as Osteopontin) may not be expected or known to a researcher. We many then find using the associations shown above...
(3/4)..that Thrombospondin (researched by Dr Alain Moreau), Osteopontin, collagen share some common concepts which may be of interest (e.g Transglutaminase). The human brain cannot make all of these connections.We have the technology to analyze thousands of research papers...
Read 4 tweets
This study found that Epstein Barr #Virus (EBV) IgM antibody seropositive #COVID-19 patients had a 3.09-fold increased risk of fever compared to EBV seronegative patients. Inflammatory markers like C-reactive protein were also higher in the EBV+ patients: researchsquare.com/article/rs-215…
2/ The study is a small, but good example of the how already-acquired persistent #pathogens can influence how a person responds to a new #infection: the existing pathogen(s) might cause additional symptoms or influence how the #immune system can respond to the new infection
3/ For example this study found that persistent Cytomegalovirus (CMV) infection caused ~10% of all T cells in CMV+ individuals to be directed against that virus. Could harboring CMV then change how the adaptive immune system responds to COVID-19?: ncbi.nlm.nih.gov/pmc/articles/P…
Read 10 tweets
Thread:

12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

1. Doctors tended to see #pwME as having “certain personality traits"

#SickNotWeak #MedEd #MedicalTwitter
bmj.com/content/328/74…
2. Doctors felt that #MyalgicE lacks a plausible pathological mechanism and its symptoms couldn't be ascribed to a precise location

3. There has been variation in the diagnostic criteria for #MECFS which has delegitimised the disease

#SickNotTired
bmj.com/content/328/74…
4. Doctors felt that #pwME had a poor work ethic

5. Doctors felt that #pwME had a poor attitude, they lacked stoicism and did not make every effort to get better as quickly as possible

#chronicillness #MedEd
bmj.com/content/328/74…
Read 8 tweets
7/1 I hope that :
all the countries in the world over stand hand in hand to encounter ,beat #COVIDー19 forever and save all human beings everywhere. It dosen't matter their races , colours or even religions . Only humanity matters .
#WorldHealthDay
7/2 I hope that :
Doctors and scientists can invent new medications for all people who are living with chronic, rare , incurable and life-threatening illnesses helping them to get over their constant sufferings and restore some of their missing lives.
#COVIDー19
#WorldHealthDay
7/3 Especially those who are living with #MECFS spending years of their lives behind doors and people who are fighting with death because of #cancer .
#COVIDー19
#WorldHealthDay
Read 7 tweets
1/8 I have a confession: I know Shelter-in-Place is still newish, and most people can’t wait for it to end. But for the 1st time, I feel like people kinda understand my #disabled #ChronicIllness life a little, like we’re all part of the same house-bound community.#MEAwarenessHour
2/8 For once, I’m not the only 1 who answers “what’s up?” with “just here at home.” For the 1st time, I’m not missing out on social events; they’re virtual. Plus, ppl actually want to talk about symptoms &health. Finally, others kinda understand my grief over missing out on life.
3/8 But in a couple of months, or whenever quarantines end, this will all change. The whole world will fling open their doors & step back out into their lives. They’ll return to busy careers, intl travel & yoga class. They’ll go back to theaters, house parties & 1st dates.
Read 8 tweets
Die übliche Darstellung der Verläufe von #COVID19 ist zu zweidimensional: am Ende ist man NICHT entweder gesund oder tot.

Viele Pathogene können zu schweren chronischen Leiden wie #MECFS führen: Diese Patienten überleben den akuten Infekt, verlieren aber trotzdem ihr Leben. 1/
Eine 2006 in Australien durchgeführte Studie hat gezeigt, dass ganze 11% der an Pfeifferschem Drüsenfieber, Q-Fieber oder Ross-River-Fieber Erkrankten sechs Monate nach der akuten Infektion an #MECFS litten. 2/

ncbi.nlm.nih.gov/pmc/articles/P…
Nach dem Ausbruch von SARS in 2003 entwickelten viele Patienten ein sog. "post-SARS-Syndrom", das symptomatisch weitgehende Übereinstimmung mit #MECFS aufweist. 3/

bmcneurol.biomedcentral.com/articles/10.11…
Read 21 tweets
In addition to being a fairly nasty respiratory virus, #COVIDー19 can invade the central nervous system and/or cause profound neurological disease. Another reason why MORTALITY is not the only statistic to track or report.

A thread (most of these links HT @scrlovelife).
A case series of 3 hospitals in Wuhan found that 36.4% of #COVIDー19 patients had central and/or peripheral neurological symptoms.

medrxiv.org/content/10.110…
These symptoms included "headache, dizziness, impaired consciousness, ataxia, acute cerebrovascular disease, and epilepsy; hypogeusia, hyposmia, hypopsia neuralgia, and skeletal muscular symptoms." #COVIDー19
Read 10 tweets
Please stop telling young people they should avoid #COVIDー19 infection to protect the old. Tell them to protect themselves.

Long-term symptoms 6+ mo post-infection:

EBV: 11%
Q fever: 11%
Ross River Virus: 11%
West Nile Virus: 31%
SARS: 87%
Ebola: 90%
COVID-19: We have no idea
In general, the topic of long-term, post-infectious sequelae is not well-studied, probably for the same reasons #MECFS has not been well-studied. But maybe a few hundred million people being infected by a novel, zoonotic virus will (unfortunately) change things.
The quality of data by infectious agent varies––a lot. By the time we start worrying about survivors, the pandemic apparatus has usually long moved on and the money just isn't there to study the people left behind.
Read 16 tweets
School's closed? Work cancelled or working from home? Quarantined or in isolation b/c of #coronavirus? Don't know what to do w/all the extra time?

#Spoonies & #unchangeables got you covered. We're experts on how to handle boredom & isolation.

A thread.
Fellow Spoonies, Unchangeables, #chronically ill peeps, feel free to chime in.

What to do with all this time?

Catch up on your fave shows on Netflix or start a new one.

No Netflix or Hulu? The following have free movies: Vudu, Crackle, Tubi, & Roku. Chime in if I missed some.
Books! If you like reading, download the Kindle app if you don't have a tablet. Amazon has Kindle Unlimited, a book subscription for $9.99/mo.

If you can't afford this, they always have free books. Or you can join an advance reader club on Facebook. Free books for reviews.
Read 24 tweets
1. thread: #coronavirus and #MECFS

We know that #MECFS can be triggered by a range of viral pathogens

So it is likely that #coronavirus could trigger a worldwide spike in ME/CFS in the next 6-18 months

@bmj_latest
bmj.com/content/333/75…
2. Post-infection #MECFS has been reported following infection from brucellosis, #EBV (mononucleosis), #LymeDisease, Q-fever, Ross River virus, viral meningitis, dengue fever and...

sciencedirect.com/science/articl…
bmj.com/content/333/75…
3. ...an increased risk of developing #MECFS has already been associated with a previous viral #pandemic

This study found that young/healthy people were just as likely as the elderly to develop #MyalgicE following in an #influenza pandemic

#coronavirus
sciencedirect.com/science/articl…
Read 8 tweets
As the US and many other countries brace for an uptick in new infections, hospitalizations, and deaths due to #COVID-19, here is one other problem almost no one is talking about: long-term chronic illness.
It can often be triggered by a severe viral infection, could be a far more common outcome than death, and yes, afflicts the young.
This study found that of people infected by Ross River Virus, Epstein-Barr Virus, OR Q fever (three completely unrelated infectious agents) 11% met #MECFS criteria six months later ncbi.nlm.nih.gov/m/pubmed/16950…
Read 8 tweets
1/ I've had a few people block me over my Tweet about the division being caused in the ME community over the use of the name ME/CFS. I've even had people pm me on Facebook to rant, then blocked me so I couldn't respond. I'm not sure what wasn't clear about my Tweet #PwME #MECFS
2/ It's not about the name - I hate CFS too. It's about people constantly criticising me, & others, for the name we choose to use. This is what is causing a divide. I only use ME/CFS when writing posts aimed at the general public, this is explained in my original tweet. #PwME
3/ Certain people feel the need to make this personal, it's not. But I guess I'm not going to change their opinions or actions. In an ideal world the name CFS wouldn't exist, but doctors in the UK do not recognise the term ME, just CFS - neither do most of the general public.
Read 8 tweets
1/ Thread

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

Is it really that bad?

Trigger warnings: The studies below paint a very bleak picture

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
2/ Full recovery from #MECFS is rare

The median recovery rate from multiple published studies is 3-7%

(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter
academic.oup.com/occmed/article…
3/ ~25% of #MECFS patients are housebound or bedbound.....

....sometimes for decades!

That means no work, no vacations, no social life, lost time, lost goals, lost relationships.....

journals.sagepub.com/doi/abs/10.117…
Read 11 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
How to Spot a Zombie Service: an NHS #chronicillness Thread 👇🏻. If your service comprises of an assessment, and then 2 years on a waiting list, occasionally reanimated by incompetent letters, then I’m afraid it’s not actually a service
The fundamentals of a service: it enables a user to complete the outcome they set out to do, read more about good services here: @LouiseDowne blog.louisedowne.com/2018/06/14/15-…
Many public services are Zombie Services: dead services that don’t actually help anyone to do anything. They look like a service: there’s a building, a phone number, letters, but they’re actually the walking dead, lumbering Sean of the Dead zombies, not speedy World War Z zombies
Read 10 tweets

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