Discover and read the best of Twitter Threads about #MyalgicE

Most recents (19)

1/25 I would like to deconstruct one of the persistent myths about #MyalgicE, because I'm seeing a recurring theme where quite a few #pwme are making sweeping statements on Twitter, that have the unfortunate effect of invalidating the diagnoses of other #PwME and/or #PwCFS
2/25 The myth often comes in two parts: (1) that there is just one set of diagnostic criteria that we should all consider to be Holy Scripture, and (2) there is only one possible family of virus that can cause the particular disease described in the Hallowed Diagnostic Writings.
3/25 Here's one recent example to illustrate my point. "ME is based on Ramsay’s Definition and an Enteroviral trigger. … It’s not ME if something else causes it." (NB multiple #pwme have been saying this for years, so this is just one example, and not intended to be personal.)
Read 26 tweets
I GOT A VIRUS, I DIDN’T DIE, BUT I NEVER RECOVERED.

As a growing number of experts warn of a rise in ME following the #COVID19 pandemic, the need for treatments that help, not harm, is ever stronger.

We are the #MillionsMissing & we need change now. A thread. #pwme
Thank you to Professor Chris Ponting @CGATist and Dr Nina Muirhead for their expert testimony, and to the many people with ME who submitted videos to be part of this.
#pwme #COVID19 #MyalgicE

Watch the full version here, and share it far and wide.
After the #COVID19 pandemic, the number of people living with ME and other chronic illnesses will grow.
Debilitating symptoms won’t resolve, and physical isolation won’t end.

We are the #MillionsMissing, and we call for an urgent response to mitigate this coming crisis. #pwme
Read 6 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
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
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
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
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
Hey @guardian @guardianscience This would be a really interesting dialogue to continue if you opened it up to the majority of researchers who don’t support the PACE trial and have good relationships with patients, instead of just giving Sharpe a platform. theguardian.com/science/audio/…
There are so many flaws in Sharpe’s argument that I won’t be able to cover them all myself (due to ME), but for one, his attempt to differentiate between ME and CFS to justify their work when he knows full well that in practice it is all considered the same. @guardianscience
This means that if you are anywhere on the spectrum including #SevereME (see #SevereMEday yesterday) with extreme exercise intolerance, then you can be put forward for CBT/GET, and actually many Severe patients were formerly moderate before these “treatments” @guardianscience
Read 10 tweets
#MECFS citizen science: What are the answers to these 6 important questions on Myalgic Encephalomyelitis???

The insightful questions below come from this nice @diagnostic_mdpi review

#mdpidiagnostics #pwME #chronicillness #SickNotWeak #MyalgicE
mdpi.com/2075-4418/9/3/…
1. Is there a genetic susceptibility which leaves some individuals vulnerable to #MECFS after exposure to a virus, bacteria or toxic chemical?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #genetic
2. What is the key initial physiological trigger causing the dramatic downward spiral in health leading to #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #immunity
Read 8 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets
Thread:

The 10 publications below provide scientific evidence that patients with #MECFS have #brain abnormalities in #neuroinflammation, #metabolism, #neurological connections and blood perfusion

#pwME suffer from #chronicillness

#pwME are #SickNotWeak
1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS

#pwME

jnm.snmjournals.org/content/55/6/9…
2. This Australian study found abnormalities in the #brain MRIs and peripheral Blood Pressure and Heart Rate in #MECFS patients including the Vasomotor centre, midbrain and hypothalamus

#pwME

sciencedirect.com/science/articl…
Read 14 tweets
The International Consensus Criteria for ME states: “Misperceptions have arisen because the name ‘CFS’ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditions”. #pwME #MyalgicEncephalomyelitis
@EmergeAus “Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.”
@EmergeAus “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Read 19 tweets
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Read 25 tweets
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more: medium.com/@jenbrea/a-new…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM: mechanicalbasis.org
Read 11 tweets
This video has had nearly 30K views 👍🏻
In it @JessicaOOTC describes her experience of being locked in a psych ward after being diagnosed with #MyalgicE by the Bristol centre


@MEActNetUK #MEAwarenessMonth #pwme #PACETrial #stopGET #MillionsMissing
Despite(/because) her ME diagnosis they interpreted her low weight as anorexia. The gut/digestive issues as a result of ME go ignored. She isn’t the only #pwme to have experienced this. It is particularly tricky as an advocacy issue if people are sectioned for ‘anorexia’ not ME
It is a high priority for Dr education and I wonder if for new #NICEguidelines we need gut issues included as core to ME, rather than the current wording of IBS as a comorbidity issue?
Locking people in psych wards for this has to stop!
@exceedhergrasp1 @jenbrea @keithgeraghty
Read 7 tweets
Today is the 10th anniversary of the day that I became housebound with severe #ME. To mark the occasion here’s a thread:

10 years ago I came home from work unbelievably overwhelmingly exhausted. #mecfs #MillionsMissing #MyalgicE #meawarenesshour
2/ I thought 2 weeks off would fix it. It didn’t. After 6 weeks I was desperate to go back to work.
I held a fellowship in bio-nano-technology at a Scottish University. I tried a phased return starting with 1 hour per day. Twice. Each time I crashed and became more unwell.
3/ Since then I have been 95% housebound- it is rare for me to leave the house for more than 1 hour per week, and common not to leave the house at all for 3-4 weeks.
Still, I’m lucky – I’m not bed bound, like so many.
Read 12 tweets

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