To wonder why the fuck long covid isn’t considered a serious outcome

[Clutchingatfog]

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

Please get off the case @Gloriia . Exercise is contra indicated for ME and the ME-like form of Long Covid. Continuing to spread science-free misinformation about ME/LC and exercise is simply damaging and only displays ignorance.

Exercise is not 'good' for people with ME (or the ME-like form of Long Covid). It has been objectively demonstrated by Cardiopulmonary Exercise Testing research that ME sufferers have a unique response to exercise and are not simply deconditioned.

A high percentage of people with ME who are now severely or very severely affected, bedbound, wheelchair bound, or even having to be tube fed, and the people with ME (most women) who have died from it, were mildly or moderately ill and mobile before Graded Exercise Therapy (GET).

ME is a WHO/CDC/NIH/NAM classified, disabling, Neuro/Immune Multisystem disease, with an abnormal response to exercise at a cellular level.

For @Gloriia and anyone else still banging on about people with MR (or Long Covid/LC) needing to push themselves/exercise .....

'The Centres for Disease Control (CDC) states : ....

'ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have a variety of abnormalities that affect multiple systems, such as:

Immune and neuroendocrine;
Cellular metabolism; and
Autonomic system regulating blood pressure and heart rate.'

Beth Unger CDC, Chief of the Chronic Viral Disease Branch (CVDB), Division of High-Consequence Pathogens and Pathology.
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I thought the whole ‘graded exercises for ME’ was proven to be as well researched as Andrew Wakefield and his ‘MMR causes autism’ shite?

@Gloriia and anyone else stuck in the science-free unevidenced belief that people with ME (or LC) need to push themselves.

Exercise or Activity as treatment for ME (or LC) has been dropped, removed from all ME Treatment Guidelines by the US National Academy of Medicine (part of the US Academies of Sciences, Government Department), by the US Centres for Disease Control (CDC), By the US National Institutes of Health (NIH) ... and finally in 2021 by UK NICE.

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ALL the (hundreds of) research studies on Exercise or Activity to improve ME have been thrown out as junk research. (That includes ALL the UK Graded Exercise/Activity studies so feverishly reported on by our shamelessly science illiterate media)

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In 2014 the US Agency for Health Research Quality (AHRQ) threw out all Exercise/Activity for ME research and warned that the diagnostic criteria (Oxford Criteria) used for those studies (to select participants) must not be used in future ME research, and that to continue to use Oxford to select ME research participants would hold back progress and cause harm to the patients.

All the Exercise/Activity for ME treatment research has subsequently been thrown out by the CDC, NIH, US National Academy of Medicine/Sciences, and by UK NICE.

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Professor Jonathan Edwards of University College London, an expert in clinical trials, told NICE that clinical trials of GET [Graded Exercise/Activity] and CBT for ME were deeply flawed.

He said that the trials were unblinded and that the key measure of success was whether patients reported they were feeling better, on a subjective scale.

The more objective measures in Exercise for ME studies, like increased activity or return to work, show no change or improvement in ME patients health or capacity for exercise/activity.

Jonathan Edwards “We don’t take trials like this seriously in clinical pharmacology so I’m not sure why anyone thinks they’re appropriate in clinical psychology. This is something every medical student is taught about.”

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'Please get off the case . Exercise is contra indicated for ME and the ME-like form of Long Covid. Continuing to spread science-free misinformation about ME/LC and exercise is simply damaging and only displays ignorance.'

I haven't at any point advocated exercise. In fact I've said repeatedly I haven't suggested marathons or gym classes. Rather goals. So if your daily routine is going into the garden then aim for for down the drive the next day/week, down the street the next week/month however long it takes. A plan and some goals no matter how small do give us some motivation. Some people with any illness become anxious amd fearful which is understandable but trying is a good thing.

I'm not being patronising, insulting, thick or ignorant. If you don't agree or if my suggestions anger you just please stop quoting me.

But unless you have a deep understanding of the mechanics of an illness, you just cannot possibly be sure that is the right approach .

I have a child working with a physio at the moment in fact, as they recover from a fracture. Even with this (and I expect even you wouldn't argue a fracture is psychological), her advice isn't "do a bit more each day"... It's "listen to your body")

Likewise with my condition,. Myasthenia, which carries many parallels with ME (in fact, I was misdiagnosed with ME for years). I can't aim to do a bit more week by week. All I can do is learn to understand my body, and the early warning signs that I need to stop what I am doing and rest. Pushing leads to crashing.(And crashing is awful and paralysing). Acceptance of the boundaries my body sets day by day is the key. I

Trying to advise on recovery without a deep understanding of a condition and how it works is about as stupid as trying to tell a cancer patient they can heal themselves with green smoothies and positive thinking.

It's not me disagreeing with you @Gloriia . It's all the international medical ME scientists/researchers from top medical schools worldwide who disagree with you.

@Gloriia "So if your daily routine is going into the garden then aim for for down the drive the next day/week, down the street the next week/month however long it takes. A plan and some goals no matter how small do give us some motivation. Some people with any illness become anxious amd fearful which is understandable but trying is a good thing.

I'm not being patronising, insulting, thick or ignorant. If you don't agree or if my suggestions anger you just please stop quoting me."

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You still advocate pushing via goals and increasing activity .....

Patronising. Yes.

Ignorant. Yes.

Insulting. Yes.

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Do you really not grasp the difference between your uninformed opinions and validated science.

If you do not grasp the difference then really, no one can help you.

ME (and Long Covid) are NOT just fatigue and are Not defined by fatigue.

Fatigue is a Symptom, not a disease. Fatigue is a Symptom of a great many medical conditions and a factor of daily life for many.

But ME Is Not Fatigue, or Chronic Fatigue

• And please everyone, stop using 'Chronic Fatigue' as a name for ME (or LC) because it confuses, and trivializes what is a disabling, sometimes fatal, WHO/CDC/NIH classified Neurological/Immune Multisystem disabling, sometimes fatal, disease.

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'Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'

Mayo Clinic Proceedings.

' Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.

It is common and debilitating, with a prepandemic population-based prevalence of 1 to 2.5 million in the United States alone and a lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure.

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There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several studies estimating that half of patients with post-COVID syndrome fulfill ME/CFS criteria.4

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Whereas the exact cause of ME/CFS is unknown, dysfunction in the neurologic, immunologic, endocrinologic, cardiovascular, and metabolic systems has been found in people with ME/CFS and post-COVID syndrome.

Research is underway to identify diagnostic markers and therapeutic targets.

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The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.

[NB - PEM can escalate and become lifelong, with No return to previous baseline of functioning, the people remaining very severely sick with no improvement]

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It has been reported that patients with ME/CFS have impaired oxygen extraction on cardiopulmonary exercise testing in proportion to the severity of their symptoms, with both oxygen extraction and workload being decreased on the second day of 2-day cardiopulmonary exercise testing.

https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext

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This sounds so hard.
I’m interested- have your medical professionals made any comment on 3 people from the same family getting it so badly at once? Is it co-incidence or some linked vulnerability?

Hi Bloozie,

My son has this weird bruising rash on his arms following Covid. He was finally diagnosed with Long Covid in 2023 after a long fight. Every time he gets sick it happens. I’m not sure how you’ve got on with the docs but we were accused of all sorts because they didn’t know what the problem was and instead of admitting they didn’t know chose to accuse my son of self inflicting the bruising. It’s symmetrical down his arms. I’ve not heard of others with this problem and been keen to make contact with others.
Feel free to DM me.
😊

Oh drop it. Your beliefs are worthless. Your beliefs are contradicted by ME research scientists worldwide. In addition, people with ME have similar, often lower, rates of pre-existing mental health conditions/trauma/childhood adverse events as all other physical chronic disabling diseases.

Professor Betsy Keller, 2015:
"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that about:blank ME is a psychological illness."[2]

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Betsy A. Keller, PhD, is a professor in the Department of Exercise & Sport Sciences at Ithaca College in New York. She is a fellow of the American College of Sports Medicine (ACSM),

Professor Betsy Keller, ME researcher, who pioneered the 2-day Cardiopulmonary Exercise Testing studies for ME. These objective studies revealed that people with ME have a unique response to exercise, are unable to reproduce activity on day 2 of the testing, when compared with healthy people and deconditioned people. Demonstrates that ME (and Long Covid) are not deconditioning.

So if your daily routine is going into the garden then aim for for down the drive the next day/week, down the street the next week/month however long it takes.

@Gloriia The problem with this is that our recovery isn’t linear. I might be able to walk to the post box at the end of our close today, but because I did that, tomorrow I won’t be able to get out of bed. So the following day I should be aiming to do less than I did the day before. That is how pacing works. That is our treatment.

So if for example I have a hospital appointment I aim to do nothing the day before or the day after. If I thought “I did 2000 steps round the hospital yesterday and I don’t feel too bad, so today I’ll do 2050 instead of staying in bed” I would crash (if I hadn’t already crashed after the hospital visit!)

The key with pacing is to make sure that we don’t exert ourselves on the days we feel up to it. So on a day when I’m a bit less tired or in pain, it’s really tempting to do something to make the most of it, but we can’t or we’ll pay the price. As my specialist says “No good day goes unpunished”. And by ‘exertion’ I don’t mean going for a run. I mean peeling some vegetables or letting DH take me out in the car for a coffee.

And believe me, it’s really difficult to sit round doing nothing because unlike people with depression, I am motivated and I’m desperate to get up and do things. But my body won’t let me. Goal setting is a luxury for us. We’d end up depressed because we could never achieve those goals. In fact, they would destroy us.

The idea there is a 'personality type' prone to ME has been debunked.

The outdated idea was people with ME are all 'A' type personalities, perfectionists, over achievers who push themselves, but that was was just speculation that became a popular meme.

If you ask on any internet thread if people with ME are 'A' personalities, lots of people with who think they are will pop up and say "Yes! That's me, A personality" - ...

But the people who are just not 'A' personality perfectionists rarely respond - no one ever says:

"Not me - I've always been a lazy arse who just can't be bothered" .... mainly cos they can't be arsed to reply.

So you may get the impression that lots of people with ME are A personalities/perfectionists etc, but that's largely because they self select to respond to such questions. And no one else does.

There are reasons that people with ME don't stop in the early weeks/months/years

• They have to keep a roof over their heads, look after children, try to keep their jobs in the face of disabling illness, no diagnosis and dismissal by Drs.

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Most people with ME haven't a clue what they have for a very long time, and can take years to be accurately diagnosed. That makes it difficult to have time off work/university etc. And mothers can't just drop out of childcaring, so try to continue.

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ME can affect anyone, 80% of cases follow a viral infection.

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Other debunked myths about ME include ME mainly affecting middle class white women, AND women of low educational achievement, AND women of high educational achievement etc etc. All nonsense.

'Myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS] affects people of all ages, genders, races, and socioeconomic backgrounds but is more frequently reported in women.
Although all racial backgrounds show comparable prevalence, Black, indigenous, and people of color are less likely to be diagnosed'

From 'Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome', Mayo Clinic Proceedings.

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I think it’s so varying it’s hard to both diagnose and cope with - I for instance did improve with a bit of excercise very gradually , and by that I mean stretching , walks, deep breathing - not the gym . Vitamins and minerals of various kinds did help me, and beta blockers helped too taken short term - but I do realise that for many these things don’t work or help. The same is true it seems of most post viral conditions - I’ve been left with a few weaknesses but not enough to make life unbearable. The fatigue aspect lingered and I have to pace myself more than I did before and the dry eyes and stuff never went away but I am thankful I recovered ‘somewhat’ - my H was never an empathetic person about these kinds of conditions but after seeing what I went through and how frightening it was for me he is now far more empathetic .

'The problem with this is that our recovery isn’t linear. I might be able to walk to the post box at the end of our close today, but because I did that, tomorrow I won’t be able to get out of bed. So the following day I should be aiming to do less than I did the day before.'

Living with any chronic condition is not linear.

Whether recovering from a virus or living with a serious illness like heart or respiratory disease one thing that is the same for everyone is mobility <not the gym or marathons> and keeping some kind of daily activity going even if that is just having a friend round for a chat does have a positive effect on mood and that is always beneficial for physical health.

Chronic medical conditions are of course challenging to live with but people should focus on what they can do and not the medical abbreviations and contents of research papers.

I have Long Covid and definitely understand where you're coming from. The public health approach to Covid is basically to pretend it isn't happening any more, which means Long Covid isn't a priority, which means the public mostly ignore it. Having a chronic illness which most people don't understand, and many people actively tell you is all in your mind, isn't easy. Some medical studies estimate the quality of life of someone with severe Long Covid is worse than someone with end stage cancer. But if you mention that you are told not to compare the two, it's disrespectful etc. But if it's true, shouldn't people be aware of it? Why are they so reluctant to acknowledge how horrible this illness is? I think it's a combination of fear and ignorance. The ignorance can be explained by the government lack of action in public health awareness, the fear is because on some level people must know Covid hasn't gone away and it can be really bad. Meeting or hearing about someone whose life has been destroyed by Covid challenges their nice state of denial so they shut down the conversation. Anyway that's been my daily reality for 5 years now.

This is inaccurate and you're basically spreading misinformation. I have Long Covid with no obvious organ damage from a moderate acute infection. But I've had MRIs which prove I have mitochondrial dysfunction which causes my muscles to tire out easily, and many, many studies have been done which show variations in T-cells and oxygen absorption in patients with LC. Please don't comment on illnesses as if you are well informed when you've clearly done barely any research. If you had you wouldn't be repeating this nonsense. Long Covid is NOT psychosomatic.

people should focus on what they can do and not the medical abbreviations and contents of research papers.

@Gloriia Ah, so you’re a science denier? That makes sense. I’ll bow out here.

People with LC have to be careful to conserve their energy. I could do all the things you describe that lady doing, but I would get puffed out loading a dishwasher. I could go to a book club but would become exhausted moving chairs around and would probably have to leave. You've judged this woman without understanding her condition, which makes you ableist. Try doing a bit of research into LC instead of having a kneejerk reaction to someone who's trying to have a bit of a normal life while struggling with a chronic illnessl

Basically you're saying that someone with this specific disability should be excluded from participating in something. You're doubling down on your ableism. Not everyone has the energy to do certain activities but can sit quietly and chat. This might be her only social activity and you're sitting there judging her for not picking up a plate.

Would you say the same to someone with cancer? Would you encourage to ignore the science too?

I suffer from the attitudes to this all the time.

I have ME. It was triggered by COVID. I am an executive at work and can only do 2 days a week in the office as the commute and everything else tires me out too much. I find it easier if I don’t have to travel but some parts of our job require it. When I do travel, I can’t do the dinners as I need to be in bed early.

The boss’s PA makes snarky comments about me all the time. About why should they change the arrangements just to suit one person etc. I’m quite happy to miss stuff and let everyone else do the things I can’t do but sometimes I need to be involved and then sometimes things do need to be arranged differently.

Believe me I wish I didn’t have it. I would do anything to be able to walk as much as I liked and stay up late but I can’t.

There but the grace of god go I should be something that those who are fit and able think when they see or hear about someone like me not ‘I don’t want to be your bloody staff’

Probably? I don’t really see the difference, what that poster is saying can easily be transferred to other diseases.

since recovering from CFs I have reflected on why it was so very important to me that people didn’t think it was Psychosomatic. I don’t think I really have an answer apart from it felt that my illness wasn’t being validated by it all “being in my head”

the reality is even if it is “all in our heads” it doesn’t make the symptoms or impacts any less, and doesn’t make it any easier to resolve or recover from.

i don't have 'long covid' but they have diagnosed me with Fibromyalgia which they believe was triggered by the now 4 bouts of Covid i've had in the last 4 years.
My family has a genetic predisposition to auto-immune disorders, my older brother has ME/CFS that was bought on by a nasty virus 12 years ago.

my best friends covid triggered POTs, VS & ME/CFS and she is being seen by the Long Covid clinic that's doing research into these cases locally.

I would add that the reasons that poorly informed or sceptical but insistent and judgy comments or advice like this are upsetting for some people with chronic illness because its (sorry for this overused shit word) triggering for us.

Because unless we’re very lucky this attitude just echoes the thoughts of our nearest and dearest who we love, trust, rely on and live with, who sometimes say things that show how much they still can’t or won’t understand our conditions, even when they’ve been told clearly what’s going on and they are seeing with their own eyes. They are so keen to minimise and have it all go away.

Because a lot of people have very fixed ideas based only on their own life experiences.
And also for a lot of people seeing this situation of a responsible adult suddenly becoming useless in lots of ways, is just too frightening for them to adapt to.

I get it, it’s very scary that anyone can go from being a healthy adult to possibly permanently disabled adult after what seems like a mild cold. Covid was a mass disabling event.

I’m not at all surprising to read about the rise of economically inactive people in the population across the whole of Western Europe. UK Society more widely in the media and this government in its sneery comments about PIP- (which I like many people with LC/CFS/ME I don’t even claim, because filling out the claim form is too exhausting. I think it’s 40 pages long and I don’t have anyone who can do it for me.)

But it’s my firm intention as soon as possible to make a claim because like anyone else I don’t want my family or me to suffer financially even further, as inconvenient as a lot of people seem to find disabled people continuing to exist in society to be. The ableism on wider society is so pervasive. If you’re not used to it being directed at you or your family it is a big shock. I feel my own massive privilege at not being exposed to it before now. Anyway it’s been good to read the comments on this thread from those who do understand. Wishing you all the best health that you can have.