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Do we know if ME/CFS affects periods in the early stages?

I suspect the honest answer is we don't really know. It's a possibility but everyone has been so busy trying to ignore the impacts of the disease for so long as far as I know there's been little to no research on ME and gynaecology, let alone in precise stages.

The MEA (I think) had a download on the issue at one point but that was anecdotal and not research based.
 
It's still weird seeing people mostly describing ME without actually mentioning ME, or in this case rejecting the similarities, but whatever the end result will still be the same. Too bad people refused to acknowledge the same issue for half a century, lots of death of suffering should have been avoided.

 
Investigative article in Vox on Long Covid experiences of long haulers and doctors as well as some research. Bit about relationship to ME below in quote. Quoted researcher Madeline Lancaster is a biologist and the group leader at the MRC Laboratory of Molecular Biology in Cambridge, UK.

Lancaster says viruses may penetrate the blood-brain barrier more often than previously thought. “The Covid crisis has shined a light on overlooked post-viral chronic fatigue syndrome (CFS),” she says. “There’s a lot of indication that inflammation of the brain can lead to those symptoms. There’s a huge overlap between those conditions and long Covid.”

But though post-viral symptoms may linger for months or even years, it can be hard for doctors to find clues in neurological tests. While encephalitis can be seen on MRIs, damage to the cerebrospinal fluid might not be visible. (Doctors can, however, look for elevated biomarkers like cytokines.) “Unfortunately, that’s one of the reasons a lot of patients with CFS have been told it’s all in their heads. We’ve let those patients down,” says Lancaster.


(my bolding)

https://www.vox.com/22166236/long-term-side-effects-covid-19-symptoms-heart-fatigue
 
Five-minute report on NPR's flagship program "All Things Considered" on work being done at John Hopkins University on "lingering symptoms" of COVID-19:

Johns Hopkins Medicine Is Trying To Help COVID-19 Patients With Long-Term Symptoms

<<Fatigue is a common symptom; cognitive complaint, like difficulties with memory, remembering things or just thinking in general; and certainly, changes in mood.>>

There is a mention of "brain fog", "chronic fatigue" and even, remarkably, an explanation of POTS -- yet no mention of ME/CFS...
And there is a reference to brain inflammation as the cause of brain fog, as if it is an established fact:

<<What we know is that inflammation, when it affects the brain, has an impact on the parts of our brain that does things like regulate mood. This is one of the awful longer-term consequence of the infection for many people.>>

And, of course, the chosen exemplar is a woman. Another one for the Back In Your Box Now, Sweeties department?
 
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I suspect the honest answer is we don't really know. It's a possibility but everyone has been so busy trying to ignore the impacts of the disease for so long as far as I know there's been little to no research on ME and gynaecology, let alone in precise stages.

The MEA (I think) had a download on the issue at one point but that was anecdotal and not research based.

It affected mine
 
Sure, me too. I don't believe there's been any rigorous research though.

I have had quite a lot of contact with a gynae over the last 5 years or so and he seems surprisingly clued up on ME & the effects of gynae interventions on ME patients. This leads me to suspect he sees quite a few women with ME.

I have no doubt there's a connection but, as far as I know, no research or in-depth questionnaires on gynae issues and ME. Let alone during different stages.
 
BBC: Coronavirus: 'Long Covid' impact estimated

This marks the start of the ONS's work in estimating the prevalence of long Covid - the longer-term health consequences of even mild coronavirus infections.

We can't yet be confident of exactly how many people have the condition.

The ONS said one in 10 people it surveyed who tested positive for Covid-19, still had symptoms 12 weeks later.

One in five had symptoms for five weeks or more.


...
The NHS also has a "Your Covid Recovery Plan" which has advice, particularly for those who needed hospital treatment.

It recommends the "three Ps" in order to conserve energy:

  • Pace yourself so you don't push yourself too hard, and make sure you have plenty of rest
  • Plan your days so your most tiring activities are spread out across the week
  • Prioritise - think about what you need to do and what can be put off
Not sure if this has been mentioned but this appears to be an undercount as they did not take chest pain or neurological symptoms in consideration, and of course they are still in denial over PEM, no matter how they want to call it, and don't consider it a symptom. Generally speaking neurological symptoms are not acknowledged yet. Probably on some ridiculous belief over "enabling hypocondriacs" or whatever.

So this may be a conservative estimate. I don't know how they still manage to still not ask the right questions at this point but I'll just assume it's some tradition because frankly it's gotten a bit absurd.
 
Just going back to that paper by Grinker one interesting point occurred to me. At no point does he indicate the nature of his expertise on the subject. He is, of course, entitled to his views. He is entitled to express them and even publish them, if he can find a willing medium. It is however customary, in the tribe which he is apparently addressing, to expect people to make clear why any attention should be paid to them.

Possession of a PhD from Harvard is not a good and sufficient reason. Even a PhD in anthropology.
 
The BBC article:
Mental health problems including depression, anxiety and struggling to think clearly, have also been reported.

Brain fog is not a mental health problem.

It is listed as a neurological symptom in the Long Covid NICE Guidelines while depression & anxiety are listed as psychological / psychiatric symptoms. This isn't the first time I've seen brain fog lumped with depression & anxiety in a Long Covid article. Can anything be done to stop this in its tracks?

Have posted re-this in a comment to the article on the BBC website.

*Edited to answer own question
 
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Not sure which thread to post this to. There is no explicit paychobabble nor mention of ME/CFS or similar.
—-
https://inews.co.uk/news/real-life/long-covid-clinics-coronavirus-locations-symptoms-months-795388

Long Covid clinics: Concern raised over staffing and funding as
patients struggle to access specialist help

£10m in funding has been promised until March 2021, but experts have
warned there isn’t sufficient capacity or money for the clinics to
properly support sufferers

By Claudia Tanner
December 16, 2020 5:56 pm
Updated December 17, 2020 9:08 am
 
https://news.miami.edu/stories/2020/12/public-voices-fellows-make-themselves-heard.html

Public Voices fellows make themselves heard
Ana Palacio, center, and other Public Voices fellows concluded the program by answering the question: Why do you do what you do?



By Maya Bell
12-16-2020
Faculty members break into an “unwelcoming” media universe to share their expertise on everything from chronic fatigue to gospel music.
For years, Dr. Ana Palacio has kept a journal, documenting the fleeting thoughts about improving health care that come to her while seeing patients at the Miami VA Medical Center. But assuming that what she had to say was of little consequence, the Miller School of Medicine professor never shared her personal insights.

Today, the Ecuadorean-born internist realizes she undervalued both her eloquence in English and her expertise in recognizing the links between COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a connection she wrote about during The OpEd Project’s Public Voices Fellowship that she and 23 other University of Miami faculty members recently completed. Brought to the University by John Bixby, the former vice provost for research, the national initiative aims to increase the influence of women and other underrepresented thinkers in the public discourse—and it clearly succeeded in elevating Palacio’s voice.

Her two commentaries about how research on COVID-19 can help fight ME/CFS not only validated her extensive knowledge about the complex, disabling, and often undiagnosed chronic illness, but led to new research opportunities that could make a difference in the lives of thousands of people suffering from ME/CFS or the constellation of chronic fatigue-like symptoms plaguing an increasing number of COVID-19 survivors.

“It was truly a life-changing experience for me,” Palacio said of the one-year fellowship, which included interactive seminars, one-on-one coaching with experienced writers/editors, and calls with media insiders. “Not only because I learned to value my thoughts, but because I gained the confidence to share them. It showed me the worst that can happen is that nobody reads what I write, and the best that can happen is that you can make a difference.”

Despite the pandemic, the University’s Public Voices fellows published more than three dozen opinion pieces on a range of subjects—from why quarantining can be bad for your health to why Vice President-Elect Kamala Harris’ music matters—in a variety of high-profile, high-exposure publications. They included The Washington Post, the Chicago Tribune, Scientific American, U.S. News & World Report, and The Hill, one of the nation’s most well-read websites.

Given how difficult it is for new voices to break into the closed media universe even in the best of times, The OpEd Project’s mentor-editors found the success of the University’s fellows during the pandemic especially remarkable. As Neil J. Young and Angela Wright noted, several front-line health care workers were writing between ICU shifts and while juggling new homeschooling, childcare, and other family challenges. Just 24 hours after giving birth to her own daughter, Dr. Candice A. Sternberg, an assistant professor of clinical medicine in the Miller School's Division of Infectious Diseases, wrote about why pregnant women should take extra care against the coronavirus.

“The hurdles we face normally in this work are substantial,” Young said. “That’s why this organization exists. That’s why we do what we do. It’s hard to break into an unwelcoming media universe that has a closed gate. It’s hard for people to believe they have something worth saying. It’s hard for them to write in a form that they are not used to, and it’s hard to do additional work in already very busy lives. Those are the usual challenges; add the pandemic and it’s very impressive what Miami accomplished.”

Several fellows, including the School of Law’s Osamudia James—whose commentaries on achieving genuine diversity in higher education and on race, isolation, and parenting in the time of coronavirus appeared in Ms. magazine and The Washington Post—were already accomplished writers in the public sphere. But, for the majority of the fellows, writing for a wider audience was a stretch that pushed them out of their academic comfort zone—to a place they realized they belonged.

“I gained so much from it—especially strategies concerning how to write for a broader audience in a way that connects my expertise with current events,” said Frost School of Music ethnomusicologist Melvin Butler, one of only three male fellows, who in addition to the piece about the vice-president elect wrote about why Black gospel music still matters. “I was reminded of the importance of taking chances and motivated to embrace the fact that my voice can, should in fact, make a difference in the world,” Butler added.

Debra Lieberman, an associate professor of psychology and editor-in-chief of the journal Evolution and Human Behavior, initially observed a confidence gap among the fellows, including herself. Calling each of the women “impressive with a capital I,” she said she caught herself wondering how she was included among them. But then she reminded herself of the sense of expertise and confidence the fellowship strove to instill.

“I think a lot of women started out as their own worst enemy, but this fellowship turned people into their own best advocates,” said Lieberman, whose initial column for Psychology Today, about mental app settings for mating, earned her an invitation to host a blog on the magazine’s website. “It made everyone say, ‘No, I am an expert because I have this number of years of training, I have these credentials, I do this type of research, and I am no less a voice you should listen to.’ ”

And that’s exactly what Palacio realized after U.S. News & World Report published her first column on how COVID-19 can help fight ME/CFS. She wrote the commentary both as a mother of a daughter whose ME/CFS went undiagnosed for years, and as a physician determined to put the condition with such varied symptoms on the radar of other unsuspecting physicians.

She also shared her hope that the connections between ME/CFS and the chronic fatigue symptoms that some COVID-19 patients are experiencing will offer a chance to combat the two debilitating conditions together. When Miami VA researcher Nancy Klimas, the director of the Institute for Neuro-Immune Medicine at Nova Southeastern University and a renowned authority on ME/CFS, reached out to collaborate with Palacio on her next article on the subject, she felt empowered to seize the opportunity.


Since then, Palacio has joined Klimas’ grant from the Centers for Disease Control and Prevention to screen COVD-19 survivors in Broward County for fatigue and several other persistent symptoms. And as a member of the Miami VA Geriatric Research Education and Clinical Center, she applied for and received $1.2 million from the Coronavirus Aid, Relief, and Economic Security Act to establish a multidisciplinary telehealth clinic for veterans who are experiencing persistent symptoms post-COVID-19 infection.

The clinic is slated to open in January—under the collaborative direction of a physician and mother who once doubted the value of her insights, training, and experience.


For Bixby, who had little trouble convincing Provost Jeffrey Duerk to support Public Voices, the fellowship was a worthy experiment. “We weren’t sure that it would work, but it was a great success,” said Bixby, professor of pharmacology and neurological surgery who will return full time to his research at The Miami Project to Cure Paralysis next year. “We are impressed by the passionate engagement of the fellows; their sense of purpose, team, and community; and most of all, the outcome—the development of a new community of UM voices who will continue to speak out and to be heard nationally.”
 
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