ME/CFS News @MECFSNews Twitter profile

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ME/CFS News

@MECFSNews

2 years

"Experts perplexed over number of people getting long covid" means that they are not experts. The real experts could see this coming since spring 2020.

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10 months

There is a particular kind of trauma that can occur in people with chronic illnesses in certain conditions. It includes being ill and being disbelieved, being labelled an unreliable witness to one's own condition, being persuaded to doubt one's perception of reality, ..

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2 years

My suspicion is that change for #LongCovid will come not from within medicine, but from the statistics showing more and more relatively young people dropping out of the workforce or school. Medicine is too paralyzed by its own habit of doing nothing about postviral illness.

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3 years

The fatigue in #longcovid and #mecfs and other chronic illnesses is easily misunderstood. It is not the same as being tired after a day of work. It means having difficulty walking, standing, communicating effectively or even turning around in bed after simple things like cooking.

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9 months

#MECFS patients tend to arrive exhausted in the doctor's office and in this state cannot think or communicate properly or stand up for themselves, or even explain the illness to another person. They arrive in an especially vulnerable state.

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2 years

1) If the virus keeps circulating, 2) and everyone is susceptible to various sequelae arising from the infection, then in several years, there will only be few people without sequelae. Most of the population will have some form of damage. So far the virus has kept circulating.

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1 year

I wanted to highlight this figure from @DrMaureenHanson 's recent paper because it looks so promising: the difference between controls and patients is extreme, something we have not seen in any paper before. (click for full picture)

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2 years

One of the insights gained from this pandemic is that society is more comfortable acknowledging death than disability and chronic illness.

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1 year

It is unacceptable to have studies run by people who don't believe what patients are saying about their illness. It's offensive and risks leading to studies that are designed for the illness not as it is in reality but how the study authors falsely imagine it is.

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9 months

My take on pacing that is going to be unpopular with physiotherapists: I notice that I pace better when no other people are involved. The best pacing occurs when the space and time around the patient is cleared of responsibilities and other people. #MECFS

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@MECFSNews

4 years

I'm so sorry for the #covid19 survivors who will develop #MECFS and then discover that medicine doesn't know how to help because they never took ME/CFS seriously. Can this pandemic be a turning point where neglect ends and earnest search for understanding and solutions begins?

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3 years

Dr Alastair Miller: "Without GET and CBT we have nothing." The evidence shows that CBT and GET do not work. We never had anything. Pretending otherwise has only delayed progress.

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@MECFSNews

2 years

One of the most bizarre aspects of the willful neglect of ME/CFS is that it appears to make no sense from an economic view. It makes sense to invest in research and treatments to get people back to normal functioning.

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@MECFSNews

2 years

Alternative interpretation: teenagers with serious chronic illness abandoned by healthcare and their family find some support in online communities where they can express their feelings.

brittany 🎀 hiatus

@sapphicswilder

2 years

has the disabled/chronic illness community here on twitter seen this yet? i’m fucking fuming. #NEISvoid #MECFS #EDS #POTS #LongCovid #chronicillness

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2 years

The most neglected illnesses are not the one with data clearly showing neglect, but the illnesses for which no data is being collected.

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3 years

Graham McPhee passed away yesterday. He was one of the citizen scientists who exposed problems in the #PACEtrial and co-authored a paper on the insufficient monitoring of harm in CBT/GET clinics.

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@MECFSNews

10 months

People with #MECFS don't need to be persuaded or motivated to do more. They need a treatment so that they can tolerate activity and sensory stimulation. If their activity / sensory stimulation tolerance increases, they will naturally want to do more.

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11 months

I'm having one of those days where I think that the psychologization of #MECFS is a crime against humanity. The harm that has resulted from failing millions of patients for many decades is unimaginable.

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1 year

A protest by #MECFS , #LongCovid and #postvac patients in Germany in front of the building of the federal parliament.

Ben no 

@Benno65164955

1 year

Heute auf der Wiese vor dem Reichstag:

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3 years

Anyone who thinks people with a disabling illness can just snap out of it by thinking positively is out of touch with reality and should not be quoted as expert by journalists.

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2 years

Researchers have discovered the mechanism through which herpesviruses reactivate. The reactivation leads to mitochondrial fragmentation and suppression of immune responses. This could be very relevant for #MECFS

How herpesviruses awaken

Dormant herpesviruses induce their reactivation via a previously unknown cellular mechanism mediated by a viral microRNA.

www.sciencedaily.com

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@MECFSNews

10 months

Adding a few more elements of this trauma: difficulty trusting others, feeling dismissed and expecting to be dismissed, loss of trust in authority/society/institutions, feeling like one is never trying hard enough, feeling like a malingerer, social isolation and withdrawal.

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@MECFSNews

3 years

In my opinion #longcovid is neglected because a small group of mainly psychiatrists have spent the last 3 decades publishing a mass of junk science on ME/CFS, amounting to a misinformation campaign that trivializes postviral multisymptom illnesses.

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2 years

Psychosomatic diagnoses appear to be used mainly to hide the fact that the healthcare system is failing a lot of patients. The hard work of finding ways to truly understand and help these patients awaits.

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3 years

Exercise is not a method of making a recovery happen. If the illness continues to improve, the person will eventually reach a point where exercise is tolerated again and beneficial. Exercise is not a way to reach that level of health however. #MECFS #LongCovid

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2 years

In this study, 74% of #longcovid patients said physical activity made their symptoms worse. Less than 1% said it improved their symptoms.

The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study

The relationship between Long Covid (LC) symptoms and physical activity (PA) levels are unclear. In this cross-sectional study, we examined this association, and the advice that individuals with LC...

www.mdpi.com

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10 months

Panic was spreading among psychosomatic theorists after the publication of study which described a transgenic mouse model of ME/CFS that replicated some features of the illness. We all know the mice are not experiencing symptoms geenrated by the brain due to a learned response.

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2 years

@EricTopol @LancetRespirMed Sounds exactly like the model that has failed us ME/CFS patients so badly for decades. Biopsychosocial theorizing does nothing to help patients and does not lead to useful treatments. It's likely to alienate patients.

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11 months

Cerebrospinal fluid proteome in #MECFS and #LongCovid . Unpublished data shown today by Prof. Bergquist during the neurology webinar of the NIH ME/CFS Research Roadmap.

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2 years

That ME/CFS patients remain disabled even when their mood is good contradicts the idea that ME/CFS is just a mood disorder with some additional mass hysteria or hypochondria.

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@MECFSNews

1 year

I did regular walking for years and it made no difference to my ME/CFS, other than triggering symptom flares if done in excess. The rapidly fluctuating symptoms are also highly inconsistent with deconditioning. Treating this illness with exercise was always nonsense.

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@MECFSNews

5 months

Perhaps a major cause ME/CFS is so misunderstood: to deal with unpredictable symptom worsening related to exertion, patients develop a habit of limiting their activities and holding back even when they currently feel okay. But to other people /1

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10 months

a pattern of negative social interactions due to the illness being misinterpreted as character flaw, self-doubt, and negative self-image (due to being unable to reject the negative attitudes of others), loss of indipendence, and subtle and sometimes overt forms of violence.

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4 years

NIH funding for #MECFS has historically been about $5 million per year. In the last 5 years it has increased to about $15 million. The NIH will spend $1.15 billion on #longcovid research. That's 76 times $15 million.

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2 years

BC007 is a drug that is being tested as treatment for #longcovid in Germany. This research will reportedly receive an additional €800,000 in federal funding. BC077 neutralizes antibodies directed at G protein-coupled receptors.

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4 years

I had a joke about postexertional malaise... but it would take you a day to get it.

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3 years

Jonathan Edwards has said the following about the NICE meeting: "There appeared to be an overwhelming majority view that the term GET should go. It was described as toxic. Similarly for 'curative' CBT." #PublishThatGuideline

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1 year

Very Interesting: #longcovid patients that better adhered to pacing experienced much higher recovery and improvement rates #MECFS

The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome - Journal of...

Background Post-COVID-19 syndrome (PCS) shares many features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PCS represents a major health issue worldwide because it severely...

translational-medicine.biomedcentral.com

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10 months

This kind of trauma seems to be common in people who develop an "invisible" chronic illness, especially during adolescence when there is less ability to think independently.

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4 years

It's worth repeating that had medicine believed #MECFS patients and not the people who insisted the illness was a psychological and behavioural problem, we would probably have been much better prepared to deal with long covid. Starting with effective communication about risks.

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2 years

@loscharlos I think there is another explanation: 4. They think it's largely mass hysteria. Because this is what this kind of illness has been claimed to be historically. For some reasons claims of mass hysteria or psychosomatic illness are exempt from the usual requirements of evidence.

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@MECFSNews

2 years

Doctors are taught to use faulty reasoning when dealing with unexplained symptoms: that an absence of evidence of measurable abnormalities is evidence that the symptoms are somehow caused by thinking and emotions.

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10 months

A research project on #MECFS 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.

First Clare Francis Research fellowship awarded

Audrey Ryback will be researching the impact of ME/CFS on mitochondrial function as identified by The ME/CFS Priority Setting Partnership | Action for M.E.

www.actionforme.org.uk

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@MECFSNews

11 months

The background story to the recent WASF3 study #MECFS . "She wrote to a scientist about her fatigue. It inspired a breakthrough."

She wrote to a scientist about her fatigue. It inspired a breakthrough.

Her dogged efforts lead to a new scientific discovery that may help many others with chronically fatiguing illnesses, including long covid.

www.washingtonpost.com

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4 years

Prof. Jonathan Edwards on Paul Garner's recent blog: Let's be straight about this, what he says is the equivalent of saying 'don't listen to all the patients whose cancer has spread and is incurable, they just can't cope, listen to those who got better by stroking crystals'.

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11 months

In my opinion we patients are too sick to perform effective advocacy at the scale that is required to obtain rapid change. We need more healthy people to become involved in #MECFS advocacy.

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2 years

ME/CFS and long covid are commonly misunderstood as a phase of recovery from an illness that is gone, instead of an ongoing and sometimes progressively worsening chronic illness.

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2 years

Why "medically unexplained symptoms" might be more likely to occur with anxiety over one's health. The prejudice says that symptoms are somehow generated by the anxiety. An alternative explanation is that an unexplained illness causes more anxiety than an explained one.

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2 years

If the population is repeatedly infected with SARS-2, over a longer period of time, what percentage of the population will have #LongCovid ? The answer seems to be: we don't really know, but it could be catastrophically high.

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@MECFSNews

1 year

In #MECFS there is this strange phenomenon where certain people who barely read research and barely interact with patients, also believe themselves to be experts on the topic. They have a mental model of ME/CFS that is not aligned with the scientific evidence.

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2 years

I suspect that if persistent #LongCovid cases continue to grow, at some point there will be a panic response, which is likely to be unpleasant and not especially effective. This would follow decades of denialism / minimization of postviral illness.

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11 months

Post-acute infection syndromes will be the focus of new Yale School of Medicine Center #MECFS #LongCovid #Dysautonomia #LymeDisease

Post-Acute Infection Syndromes Will Be the Focus of New YSM Center

The effects of infection don't necessarily end when the first symptoms subside. The new center will work to unravel the mysteries of lingering diseases.

medicine.yale.edu

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2 years

Doctors who adopt an approach of "downplay symptoms, don't diagnose, tell patients there is nothing wrong, encourage patients to ignore symptoms, persuade patients the symptoms have a mental origin" are traumatizing and harming patients. #MECFS #LongCovid #MedTwitter

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1 year

If, as suggested by a researcher at the #IIMEC15 conference, 25% of #MECFS patients also have (presumably undiagnosed) multiple sclerosis, then that has large implications. It means that MS is being missed too often.

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2 years

#MECFS is an instance of terrible inequity in healthcare. Inequity so bad that the doctors aren't taught about the illness and there is hardly any research that could guide treatment even if a doctor wanted to provide it.

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2 years

How different perspectives can be. For some, the idea that illnesses like ME/CFS or long covid can't be treated with exercise or positive thinking equals "spreading fear". It's just a factual statement.

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@MECFSNews

1 year

Is there a term for negative attitudes towards patients that is driven by the belief that patients remain ill only because they are choosing to remain ill or lack the strength of character to do what it takes to get better? e.g. like an unpleasant rehab program.

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2 years

Christine lived 14 years with severe ME. Then she was treated for breast cancer and this also improved her ME. The articles has comments from Norwegian oncologists who say they've had 15 patients with similar stories. #MECFS

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3 years

Postviral illness and chronic illness don't disappear if you stop believing in them. Chronic illness affects your ability to function and your firm decision to not let it affect you will make no difference. This is why patients say the illness is physical.

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2 years

The @NIH is forming a working group that will create a research roadmap for #MECFS . They are looking for patients, caregivers, partners, or people with a family history of ME/CFS to join the working group.

NANDSC ME/CFS Research Roadmap Working Group

www.ninds.nih.gov

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2 years

Fake experts, that is people who convincingly present themselves as experts to the public but in reality lack competence and knowledge and therefore end up making disastrously bad decisions, is basically the story of ME/CFS.

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5 months

Disbelieving #MECFS patients is a form of psychological violence because this disbelief is how actual mistreatment is justified. Disbelief creates an environment of constant threat for patients. Patients want to be believed and accepted as they are.

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1 year

Now with added context from readers.

The Guardian

@guardian

1 year

Chronic fatigue guidance discouraging exercise is flawed, say researchers

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2 years

An important political goal for #MECFS and #LongCovid patients would be achieve the ability to have a say in what kind of research is funded. It's scandalous that money continues to flow into psychosomatic studies. Research is meant to solve problems and help patients.

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9 months

We need to come up with a word to describe the inability of "normal people" to understand that symptoms caused by disease they haven't personally experienced are actually bad (even if the patient can't describe them well).

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@MECFSNews

2 years

Camp beds being placed in front of the German federal parliament as part of a protest action to draw attention to #MECFS .

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2 years

I regularly hear about patients with #MECFS that have passed away prematurely. Sometimes under the age of 30. Outside of the patient community, these deaths seem to be entirely invisible, even on death certificates.

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2 years

Over 200 journalists, researchers, physicians, and patients sent a letter to @newrepublic , demanding corrections and an apology for the misinformation spread by columnist Natalie Shure. #MECFS #LongCovid

The New Republic Has Long COVID All Wrong

publicherald.org

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2 years

In my opinion it is fairly clear from the characteristics of postexertional malaise that it is not caused by deconditioning but a very different process. Someone who proposes to treat PEM with exercise has misunderstood rather badly what PEM is.

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2 years

Dr. William Weir, Medical Advisor to Hope 4 ME & Fibro Northern Ireland has accepted special invitation from Sajid Javid, U.K. Secretary of State for Health & Social Care, to be a vital member of new ‘Rethinking M.E.’ Westminster Parliamentary Group. #MECFS

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3 years

Healthcare workers who didn't believe in #MECFS and #LongCovid at first, but now do: What do you think are reasons for this disbelief?

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3 years

Norway: a study planning to treat #MECFS patients with the #lightningprocess has been rejected by the Research Ethics Committee due to concerns over conflicts of interest.

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5 months

this can look a lot as if ME/CFS patients are being held back by anxiety and fear, or for other psychological reasons. Other people do not have access to the same information as us patients , they cannot feel what happens in our bodies and often base themselves on appearances. /2

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11 months

Dr Younger on neuroimaging results in #MECFS . He says it's time to run clinical trials of anti-inflammatory interventions. From the ME/CFS Research Roadmap: Nervous System webinar.

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1 year

There appears to be corruption in the Netherland's research programme on #MECFS . It was intended to have a biomedical focus but psychosomatics researchers have been able to secure some of the funding for their flawed studies. I suspect this will grow into another scandal.

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2 years

The @NIH has found that increased expression of the WASF3 protein is associated with abnormal mitochondrial function in the muscles of some #MECFS patients. Credit to @brianvastag . While we wait for the publication of their findings, let's look at the underlying biology:

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3 years

It seems to me that NICE has taken a step towards invalidating itself. There is no point in having an organization tasked with developing evidence-based treatment recommendations if they cave in to political pressure at the last minute.

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9 months

The DecodeME team will present preliminary findings from the first 4500 participants on November 1, during the next NIH webinar on genomics/genetic susceptibilities in #MECFS . Source: Dr. Whittemore, NIH.

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5 years

The new Danish health minister has stated that he will follow the decision by parliament to treat #mecfs as neurological illness rather than as functional disorder.

Sundhedsminister blåstempler kontroversiel beslutning fra foråret

Som en af sine første gerninger har den nye sundhedsminister Magnus Heunicke (S) sagt god for, at den – for læger – kontroversielle beslutning om, sygdommen kronisk træthedssyndrom (ME) fremover skal...

dagensmedicin.dk

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3 years

@EricTopol @ScienceMagazine Can we have some good studies of ME/CFS now please? Many patients are just as ill as patients with multiple sclerosis and most cases of ME/CFS begin after an infection, with EBV being an important trigger (especially in adolescents).

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3 years

"There was also complete agreement that GET should not continue under some other name. The inappropriateness of GET as defined in PACE was agreed by all. "

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4 years

The EU resolution for additional funding for biomedical research into #MECFS was approved.

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1 year

@guardian There is no doubt that exertion aggravates the symptoms of ME/CFS. This is widely accepted among experts and has been confirmed by three large government funded reviews in the US, The Netherlands and now in the UK by NICE.

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1 year

Another aspect that's so problematic about these pro-CBT/GET articles is that authors are so obviously misunderstanding how ME/CFS works e.g. they say if graded exercise therapy exacerbates fatigue, patients should maintain their current level of activity and /1

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4 years

@PaulGarnerWoof The article depicts ME/CFS patients as being overly invested in biological explanations for illness. That may be the impression on social media but in reality many patients try a wide range of therapies including various positive thinking techniques.

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1 year

Results from the NIH's intramural study of #MECFS : WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in ME/CFS

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1 year

We may already have effective treatments for #MECFS that were not recognized as such because of a lack of understanding of how to measure improvement in illness severity. When the symptoms depend on activity levels, patients will find a balance between symptoms and activity. /1

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3 years

It prevents the body from functioning properly, no matter how motivated the person is. It's a serious problem and not something that a healthy person experiences (except perhaps under extreme and rare circumstances).

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2 years

@Silas33 Don't waste too much time trying to cure yourself with desperate treatments. Demand clinical trials and research.

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5 years

Impressive in multiple ways: Evelyn van den Brink addressing the EU petitions committee and speaking about the urgent need for more biomedical funding into #MECFS .

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11 months

People with #MECFS are being harmed by a flawed Cochrane Review that claims exercise is a treatment. Please sign this petition to call on Cochrane for action. #pwME #MyalgicEncephalomyelitis

Sign the Petition

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

www.change.org

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@MECFSNews

3 months

One lesson I learned from living with ME/CFS is that resisting wishful thinking is very important. When I was in a desperate situation with no hope, I clung to every idea and belief that gave me hope. It was often a departure from reality.

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10 months

I would appreciate if some people with the right expertise got together and published an article that explained why all the various brain training programs (and similar) are untrustworthy pseudoscience and quackery.

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1 year

Has there been a study that attempted to understand WHY broader society misunderstands/has negative attitudes towards #MECFS ? Is it more an inability to understand subjective experiences, an issue of being uncomfortable with an unsolvable problem, or a misinformation issue?

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1 year

A problem with many of the findings in ME/CFS research is that they don't seem to be abnormal enough to explain such a disabling illness. But this finding here is different and could be much closer to the root of the problem than others.

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2 years

In Germany there is an event with medical professional discussing whether long covid is "fact or fiction". It's a false balance that affords credibility to a denialist position. There are thousands of publications on long covid and ME/CFS that clearly show them to be a fact.

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6 years

If we treated celiac disease like #mecfs : patients would be told to gradually increase their bread consumption to habituate themselves to the resulting symptoms. Gluten avoidance would be labelled as fear avoidance resulting from illness beliefs.

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@MECFSNews

2 years

As the year comes to an end, I want to say: I hope that 2023 will bring a much needed research breakthrough in #MECFS . There are several important studies lined up that could make this happen.

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ME/CFS News

@MECFSNews

10 months

People With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Exhibit Similarly Impaired Vascular Function #MECFS

People with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Exhibit Similarly...

This study aimed to compare flow-mediated dilation values between individuals with long COVID, individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and healthy age-matched...

www.amjmed.com

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ME/CFS News

@MECFSNews

1 year

I often think about the immense harm that the neglect and psychologization of ME/CFS has done. Do those who participated in it understand the harm that they've done? They've set society up to fail miserably in managing long covid. Many millions more are now sick and disabled.

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