[mrjonathanr]

Hi Sean, sorry to read about your experience at the GP. That is very poor.

[seankenny]

Thanks. It actually got worse with the long covid clinic - I only got referred on for treatment because I took in my own data for a blood pressure test that reveals dysautonomia, which I strongly suspected I had and is very common in long covid patients. That got me a cardiologist appointment and an eventual diagnosis, but no thanks to the so called specialist clinic. That a major London hospital couldn’t design a proper long covid service was a real shock.

Putting my economist hat on for a moment, the impact of chronic illness on the labour market is huge right now and I’m sure long covid is a major component of this. This is bad for everyone, it’s insanity that the government haven’t properly grasped this issue.

[stone]

Sean, it's great to hear that, thanks to your efforts, your long covid treatment is now less woeful.

I'm regularly struck by just how hard medicine evidently is. Doctors screw up a lot. My impression is that is despite their extraordinary levels of diligence and dedication. They are just fallible humans.

Regarding mrjonathanr's point about a systematic tendency to mis-attribute physical illness to psychological influences -I'm much less sure. I was very struck by a TV program by Chris Van Tullekan ( https://www.bbc.co.uk/programmes/b07w532p ). He addressed the issue of patients with chronic pain (due to clear physical issues). There was no effective drug treatment for them because painkillers stopped working after a few weeks. Despite that they were being prescribed totally ineffective, harmful and expensive painkiller drugs for years. However a Kung Fu expert was able to help a lot with mind control stuff.

Perhaps another example is psychiatric illness where perhaps sometimes psychological/behavioural approaches get overlooked.

I also think it is worth remembering that for many disease presentations, "functional" illness is a genuine regular cause. Doctors will have come across patients with stroke type symptoms or seizures or whatever that are "functional". Those patients are just as sick and just as deserving of solidarity etc and just as deserving of treatment that is tailored to their causative (psychological) mechanism. https://www.bbc.co.uk/programmes/m000112j

[seankenny]

It’s not great, it’s woeful. No one denies that medicine is difficult, my point is that for some chronic illnesses doctors are barely doing medicine at all. Ignoring basic tests, showing an irrational preference for disproven treatments, gaslighting patients, the works. Long covid patients literally beg for a doctor that says “this is difficult and I’m not sure how to treat you” because that kind of admission of fallibility is as rare as rocking horse shit when talking to patients. The closest I’ve had is “well what do you expect me to do?” and that’s not very close at all!

[Stabbsy]

n=1 etc., but I spent most of 2023 with something that may or may not have been long Covid. If not long Covid, then maybe some sort of post-viral response. I eventually went to the GP (my wife's a GP, so we chatted about it, but needed to see my GP to get the various tests set up). It was never actually diagnosed as long Covid (or anything else) - blood test, chest x-ray and ECG showed nothing (or at least nothing that would have suggested a definitive diagnosis).

Despite the article's suggestion that GET/CBT aren't (or might not be) the answer, that's basically what I've done - not from any GP treatment plan, just me trying to work things out for myself. I don't deal with doing little/no exercise very well and don't deal with "not performing" or not having a training goal either. I found that 6 months of running/climbing and feeling terrible about my performance in addition to feeling shattered after exercise meant that I wasn't going out at all. I think the CBT gave me the headspace to accept the poor performance and just enjoy the climbing/running for its own sake, despite feeling terrible. In turn, this meant I was able to build the exercise volume up really carefully over the next 3/4 months. It's been a slow process and I've had to resist the urge to throw the towel in or overdo it on numerous occasions. However, I'm back to running 40-50 miles a week, having struggled with running 10 miles a week in October. Also doing 3 climbing sessions a week alongside this.

I'm well aware that my long Covid (or whatever) wasn't the most severe and it sounds like Sean has been in a far worse place for far longer. Also aware that the above is entirely anecdotal and the same improvement may have happened if I'd sat on my arse and moped around for 3 months. Probably the most useful tool in my recovery has been my smart watch - resting HR, HRV and body battery alongside HR during exercise have been key to everything I've done (despite my wife telling me I should try ignoring it). In some ways, the GP appointment told me nothing, but I did ask if I was going to cause myself any damage if I carried on increasing exercise load and he seemed comfortable with that (once he'd seen ECG results - which I think ruled out myocarditis?). I get the impression that there is very little guidance to GPs on how to deal with long Covid, although this may be dependent on which CCG/health authority you're in.

It’s not great, it’s woeful. No one denies that medicine is difficult, my point is that for some chronic illnesses doctors are barely doing medicine at all. Ignoring basic tests, showing an irrational preference for disproven treatments, gaslighting patients, the works. Long covid patients literally beg for a doctor that says “this is difficult and I’m not sure how to treat you” because that kind of admission of fallibility is as rare as rocking horse shit when talking to patients. The closest I’ve had is “well what do you expect me to do?” and that’s not very close at all!

Really sorry to hear this Sean. All I can say is that “this is difficult and I’m not sure how to treat you” is basically what my GP said to me.

[stone]

I wonder whether some doctors are taught not to admit to patients when they don't know how to treat? https://www.dawn.com/news/1365536

I suppose sometimes a confident doctor is just what a patient needs to hear. I know I found it an enormous relief when I was told I was suffering from mania/psychosis and that was something they were used to dealing with and everything would be sorted out for me. Simply being told that seemed to me at the time to be the most important aspect of the treatment.

I guess the worst of all possible worlds is where a doctor clearly isn't at all confident but also feels duty bound to pretend otherwise and so ends up appearing both clueless and dishonest   

[SA Chris]

My brother had that when he developed Bell's Palsy. The (very young) doctor he saw was blatantly typing the symptoms into the NHS website.

[mrjonathanr]

Stabbsy, that sounds tough. Glad you’re feeling much better.

Stone, I’m sorry if I have not been clear. I don’t belief there is a ‘systematic tendency’ (not quite sure what that means tbh?) …could you point me to where you thought I was saying that?

Regarding mrjonathanr's point about a systematic tendency to mis-attribute physical illness to psychological influences -I'm much less sure.

I do believe that some conditions have met with resistance from a proportion of physicians unwilling to accept a physical rather than psychological aetiology. I also believe that there has been a lack of rigour in arriving at these positions. And that the consequences for large numbers of people have been devastating. This is what, in his own way, Monbiot is saying in the article. The key takeaway - and why I linked to it - is that this is finally being recognised.

Don’t forget for patients with serious long term illness in this position, many will have lost jobs, financial stability, and the sense of purpose and achievement that comes with work and careers. They will also be fearful for the future, struggling to cope with daily challenges, with hobbies and with social opportunities.

The only normal response to that is grief, compounded with a huge sense of hurt and bewilderment at not being believed. It’s a betrayal. (The word is chosen with care.)

That is what the article is about- not some reluctance to admit to the merit of psychological approaches to the healing process. That was obvious, surely?

By definition, psychology plays its role in every form of ill health, in myriad ways. You can see that at play by reading any injury related thread on this site. That distress is real, as is the need to grapple with it mentally, I think most of us have experienced the feeling of horror at some new injury or other. Now extrapolate that to people who have lost careers, livelihoods, marriages and everything else that can come with a disability. The least they are owed is a fair hearing from those tasked with helping them and the integrity to admit it when they don’t have the answers.

[stone]

Different cases of disease have varying levels of psychological influence over their aetiology. Even wound or broken bone repair (or lack of it) entails inflammation etc that is influenced by stress levels etc.

For doctors to best serve their patients they need to intervene in anyway that improves the outcome, be that by positively influencing psychology and/or with drugs or surgery or whatever.

I am wary when I hear stuff that seems to imply that there is a neat binary distinction between disease presentations that are 100% physical in aetiology versus diseases that are always 100% psychological. Biology is always very complex and messy.

If there are great treatments for long covid that are not being offered to patients due to some ideology, then obviously that is scandelous. Is that the case though? Or is everyone just clueless and so resorting to recommending "positive thinking" in the absence of their being anything else? Obviously if such a recommendation is made in a cack-handed way, then it is worse than useless. But that isn't to say that for some cases it couldn't potentially be the right thing to do.

For myself, for an entirely different (mental) illness I'm a fan of such an approach (eg see this video https://www.wellnessrecoveryactionplan.com/wrap-videos/ ).

In the past, I've also had lymphoma. I was extremely glad that there was effective chemo for that (I also had radio therapy). I sort of dabbled  (probably pointlessly) with "positive thinking" during that too.

[dunnyg]

If there is some treatment for long covid, I'm all ears. All I've seen is think happy thoughts and accept your new life

[stone]

Stone, I’m sorry if I have not been clear. I don’t belief there is a ‘systematic tendency’ (not quite sure what that means tbh?) …could you point me to where you thought I was saying that?

Regarding mrjonathanr's point about a systematic tendency to mis-attribute physical illness to psychological influences -I'm much less sure.

I was thinking of this

I do agree Stone, that medics need the freedom to diagnose pyschosomatic illness where it is supported by strong evidence. Unfortunately, I suspect there is a far greater tendency to ascribe psychological explanations to physical illness than to diagnose physical causes to psychological conditions.

[stone]

I think it is worth reflecting on how a desire for proper meaty medical intervention rather than wishy-washy psychological approaches led to this https://en.wikipedia.org/wiki/Lobotomy#History

I really hope that long covid and ME get effective treatment strategies. I think it is important to cast aside prejudices about whether potential psychological aspects of aetiology are less validating of patient experience or whatever. Perhaps there is very little psychological influence over potential disease outcome for those diseases or perhaps there is a lot. My understanding is that at this stage, medicine is unsure and prejudice in either direction is unhelpful.

[mrjonathanr]

I was thinking of this

I do agree Stone, that medics need the freedom to diagnose pyschosomatic illness where it is supported by strong evidence. Unfortunately, I suspect there is a far greater tendency to ascribe psychological explanations to physical illness than to diagnose physical causes to psychological conditions.

A pretty self-evident statement, I should have thought. Nothing about a ‘systematic tendency’ though?

Honestly, I think your intentions are benign Stone but I don’t think you’re seeing this clearly. It is NOT about the validity of psychological interventions in medicine, it’s about stubborn and damaging misattribution in the face of evidence to the contrary, with potentially devastating consequences.

Consider that people close to those who are unwell will take their cue from judgments of medical professionals. If that judgment is ‘it’s all in the mind’ when people are physically ill, no amount of CBT/placebo/positive self-talk will fix it. People can adjust to disabling conditions with the support of loved ones but locating responsibility for the illness in the patient who ‘resists’ getting better can destroy that support and the self-belief needed to navigate a crisis at the very time it is most needed. That’s a serious moral injury.

Psychological interventions have merit in many situations and I’m glad that you feel you have benefitted, many people have. I wouldn’t discount therapy as an adjunct, but physical illnesses require physical solutions. You’re not going to cure polio/hiv/cancer with positive thoughts, are you? People die of this nonsense.

 I’ll leave it there.

[kelvin]

My experience with Doctors when diagnosed with CFS was shit. Had multiple blood tests, all negative over long period. Diagnosis and then a shrug and goodbye. There is little support or any idea of a plan for recovery via doctors on the NHS. Not sure if the same for long covid but I suspect as much.

My experience entirely with long covid. I have a private MECFS diagnosis now.

I gave up on the GP a while back.

[kelvin]

Different cases of disease have varying levels of psychological influence over their aetiology. Even wound or broken bone repair (or lack of it) entails inflammation etc that is influenced by stress levels etc.

For doctors to best serve their patients they need to intervene in anyway that improves the outcome, be that by positively influencing psychology and/or with drugs or surgery or whatever.

I am wary when I hear stuff that seems to imply that there is a neat binary distinction between disease presentations that are 100% physical in aetiology versus diseases that are always 100% psychological. Biology is always very complex and messy.

This.

My body is certainly broken. Low cortisol being the latest thing proven by tests but as I've been slowly healing, it's becoming obvious that my mental wellbeing is playing a huge part in how my illness manifests itself daily.
I see people with LC or MECFS raging when they think someone is suggesting that it's in their head. Then on the other hand, there are those that think it's only in the head.
Truth is we are complex and unified. Everything affects everything.

[petejh]

To offer something tangible for those suffering long covid (Sean, Dunny, Kelvin, Shurt, others?).

Like many things this comes from my investing sideline hobby. I became interested in 2021/22. As an investment it's a disaster (like most of my history of biotech.. I should stick to rocks and metals). But as a tool to aid diagnosis of long covid it may be of interest for you to chase up and try to get yourselves on the UK study currently underway. That's if you're suffering breathlessness.. but maybe you aren't breathless, but your lungs still aren't functioning to their best and you aren't aware? I'm not in any way medically qualified, nor is it investment advice! 

https://oxfordbrc.nihr.ac.uk/ouh-agrees-long-covid-research-collaboration-with-polarean/

Background - the use was recently approved by the FDA in the US and the machines are currently being rolled out in hospitals across the US. There were a couple already in hospitals being used for studies. AFAIK there's only one or two hospitals in the UK with the machine, again being used for the study. The issue with lung imaging is current mri or CT can't provide the granular detail to accurately visualise lung ventilation and gas exchange. The xenon adaption adds that detail.

Overview from the study website:
Oxford University Hospitals (OUH) and the medical imaging technology company, Polarean Imaging plc, have entered into a research collaboration to study the long-term effects of COVID-19 in patients who are still experiencing breathlessness months after infection.

Hyperpolarised xenon MRI scans can detect underlying damage to the lungs that is not detectable on CT scans
Polarean produce an investigational drug‑device combination product using hyperpolarised xenon gas to enhance magnetic resonance imaging (MRI) in pulmonary medicine.

Xenon MRI imaging technology uses a novel approach that can detect functional changes of the lung that impact its ability to properly handle the exchange of gases during inhalation and exhalation. The upcoming research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect underlying damage that is not detectable by traditional lung imaging, such as CT scans.

The research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect areas of possible lung damage in patients with long COVID.

Under the terms of the collaboration, Polarean will provide its investigational xenon polariser system to OUH for their research. In turn, OUH will work with Polarean to optimise the imaging workflow and analyse the datasets coming from the newly enrolling EXPLAIN study. Through novel analyses of gas-exchange images, Polarean and OUH hope to better characterise long COVID and improve patient care.

The EXPLAIN study, which also involves teams from Sheffield, Cardiff and Manchester, is supported by the NIHR Oxford Biomedical Research Centre.

Professor Fergus Gleeson
Prof Fergus Gleeson (left), Professor of Radiology at the University of Oxford and Consultant Radiologist at OUH, said: “We are pleased to be working with Polarean, now having access to their most advanced hyperpolarised xenon equipment.  With this new system, we will be able to image more patients more efficiently to see if we can uncover the underlying causes driving long COVID as part of our EXPLAIN study.”

Richard Hullihen, CEO of Polarean, said: “Oxford University is a leading pioneer in the use of Xe MRI to unravel the underlying pathophysiology that drives persistent breathlessness in patients with long COVID. We are delighted to collaborate with them on new image analyses as part of the upcoming EXPLAIN trial that might shed additional light on the mysterious illness that has been affecting a growing number of patients over the past few years and affecting their quality of life.”

Long COVID is an umbrella term used to describe ongoing symptoms following COVID-19 infection after four weeks. Symptoms are wide-ranging but breathlessness is one of the most common and can persist for months after the initial infection. Investigations including Computed Tomography (CT) and physiological measurements (lung function tests) can often be unremarkable. The mechanisms driving breathlessness remain unclear, and this may be hindering the development of effective treatments. Therefore, new diagnostic modalities are crucial to advance the care of these patients.

The EXPLAIN study, which involves teams in Oxford, Sheffield, Cardiff and Manchester, is using hyperpolarised xenon MRI scans to investigate possible lung damage in long COVID patients who have not been hospitalised with COVID-19 but who continue to experience breathlessness.

It is envisaged that 400 participants will be recruited. These include:

Patients diagnosed with long COVID, who have all been seen in dedicated long COVID clinics and who have normal CT scans
Participants who have been in hospital with COVID-19 and discharged more than three months previously, who have normal or nearly normal CT scans and who are not experiencing long COVID
An age- and gender-matched control group who do not have long COVID symptoms and who have not been hospitalised with COVID-19
The findings of an initial pilot study involving 36 people has identified abnormalities in the lungs of long COVID patients who had been experiencing breathlessness.

A polarisation device transforms the inert noble gas, 129xenon, into a hyperpolarised state using circularly polarised laser light. The hyperpolarised gas is inhaled by a patient to fill the space normally occupied by air in a single 10-second breath hold. The hyperpolarised gas then enhances the MRI signal, making regional lung function, including gas exchange, from the lungs to the blood visible in an MRI scan. The use of xenon MRI is non-invasive, and does not impart any radiation to the patient.

[kelvin]

To offer something tangible for those suffering long covid (Sean, Dunny, Kelvin, Shurt, others?).

Like many things this comes from my investing sideline hobby. I became interested in 2021/22. As an investment it's a disaster (like most of my history of biotech.. I should stick to rocks and metals). But as a tool to aid diagnosis of long covid it may be of interest for you to chase up and try to get yourselves on the UK study currently underway. That's if you're suffering breathlessness.. but maybe you aren't breathless, but your lungs still aren't functioning to their best and you aren't aware? I'm not in any way medically qualified, nor is it investment advice! 

https://oxfordbrc.nihr.ac.uk/ouh-agrees-long-covid-research-collaboration-with-polarean/

Background - the use was recently approved by the FDA in the US and the machines are currently being rolled out in hospitals across the US. There were a couple already in hospitals being used for studies. AFAIK there's only one or two hospitals in the UK with the machine, again being used for the study. The issue with lung imaging is current mri or CT can't provide the granular detail to accurately visualise lung ventilation and gas exchange. The xenon adaption adds that detail.

Overview from the study website:
Oxford University Hospitals (OUH) and the medical imaging technology company, Polarean Imaging plc, have entered into a research collaboration to study the long-term effects of COVID-19 in patients who are still experiencing breathlessness months after infection.

Hyperpolarised xenon MRI scans can detect underlying damage to the lungs that is not detectable on CT scans
Polarean produce an investigational drug‑device combination product using hyperpolarised xenon gas to enhance magnetic resonance imaging (MRI) in pulmonary medicine.

Xenon MRI imaging technology uses a novel approach that can detect functional changes of the lung that impact its ability to properly handle the exchange of gases during inhalation and exhalation. The upcoming research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect underlying damage that is not detectable by traditional lung imaging, such as CT scans.

The research builds upon the pioneering work conducted at OUH showing that hyperpolarised xenon MRI can detect areas of possible lung damage in patients with long COVID.

Under the terms of the collaboration, Polarean will provide its investigational xenon polariser system to OUH for their research. In turn, OUH will work with Polarean to optimise the imaging workflow and analyse the datasets coming from the newly enrolling EXPLAIN study. Through novel analyses of gas-exchange images, Polarean and OUH hope to better characterise long COVID and improve patient care.

The EXPLAIN study, which also involves teams from Sheffield, Cardiff and Manchester, is supported by the NIHR Oxford Biomedical Research Centre.

Professor Fergus Gleeson
Prof Fergus Gleeson (left), Professor of Radiology at the University of Oxford and Consultant Radiologist at OUH, said: “We are pleased to be working with Polarean, now having access to their most advanced hyperpolarised xenon equipment.  With this new system, we will be able to image more patients more efficiently to see if we can uncover the underlying causes driving long COVID as part of our EXPLAIN study.”

Richard Hullihen, CEO of Polarean, said: “Oxford University is a leading pioneer in the use of Xe MRI to unravel the underlying pathophysiology that drives persistent breathlessness in patients with long COVID. We are delighted to collaborate with them on new image analyses as part of the upcoming EXPLAIN trial that might shed additional light on the mysterious illness that has been affecting a growing number of patients over the past few years and affecting their quality of life.”

Long COVID is an umbrella term used to describe ongoing symptoms following COVID-19 infection after four weeks. Symptoms are wide-ranging but breathlessness is one of the most common and can persist for months after the initial infection. Investigations including Computed Tomography (CT) and physiological measurements (lung function tests) can often be unremarkable. The mechanisms driving breathlessness remain unclear, and this may be hindering the development of effective treatments. Therefore, new diagnostic modalities are crucial to advance the care of these patients.

The EXPLAIN study, which involves teams in Oxford, Sheffield, Cardiff and Manchester, is using hyperpolarised xenon MRI scans to investigate possible lung damage in long COVID patients who have not been hospitalised with COVID-19 but who continue to experience breathlessness.

It is envisaged that 400 participants will be recruited. These include:

Patients diagnosed with long COVID, who have all been seen in dedicated long COVID clinics and who have normal CT scans
Participants who have been in hospital with COVID-19 and discharged more than three months previously, who have normal or nearly normal CT scans and who are not experiencing long COVID
An age- and gender-matched control group who do not have long COVID symptoms and who have not been hospitalised with COVID-19
The findings of an initial pilot study involving 36 people has identified abnormalities in the lungs of long COVID patients who had been experiencing breathlessness.

A polarisation device transforms the inert noble gas, 129xenon, into a hyperpolarised state using circularly polarised laser light. The hyperpolarised gas is inhaled by a patient to fill the space normally occupied by air in a single 10-second breath hold. The hyperpolarised gas then enhances the MRI signal, making regional lung function, including gas exchange, from the lungs to the blood visible in an MRI scan. The use of xenon MRI is non-invasive, and does not impart any radiation to the patient.

Appreciated Pete. I'm actually waiting for a lung scan currently as I have severe asthma but not expecting it to be anything other than clear, for the reasons you outlined.

I can only speak for myself but 'brain fog' has been the most devastating part of long covid personally.
After lots of lymphatic and glymphatic work, I'm on top of it now but for a while - well, it felt like dementia had started.

[shurt]

My experience with Doctors when diagnosed with CFS was shit. Had multiple blood tests, all negative over long period. Diagnosis and then a shrug and goodbye. There is little support or any idea of a plan for recovery via doctors on the NHS. Not sure if the same for long covid but I suspect as much.

My experience entirely with long covid. I have a private MECFS diagnosis now.

I gave up on the GP a while back.

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience.  To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

[kelvin]

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience.  To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

So much truth and honesty there Shurt, it's really refreshing to hear!
That's f@#kin' ace you made it back to health  It's not an easy thing and takes so much when you really have nothing much to give, plus having a partner who's on your side makes everything easier.

As you say, it's a different journey for all of us and lots of relapses along the way. I'm doing okay - just over a year ago I bought a walking stick, my brain was falling apart and I didn't know what had hit me. I was scored at 2.5/10 and now I'm a 7/10. I'm absolutely going to recover.

UKB has played a part with the Black Dog Club and Sean Kenny has been a rock. Knowing someone is there, on the other end of messenger, who fully understands what fatigue actually is makes so much difference. Obviously, I wish he didn't have any experience in this but yeah, it's really helped.


I completely agree with you that positivity matters - you won't heal yourself if you're digging a pit for yourself in your head.
Words matter. Especially the words you speak to yourself internally.
It's really easy to separate 'you' from your body and blame your body from letting 'you' down, when the truth is you are one and the same thing. Your body is going to get you better, that's what it wants and what you want also. There's no good will come from treating your own body as the enemy 🤷🏻‍♂️ I've had to learn to be kinder to myself internally.

I don't think there are too many folk who now know more than me about the lymphatic system. I've had to learn with a head like jelly 🤣 and it's been tough but ultimately, so so rewarding. This year, science has shown/discovered new parts to the glymphatics of the brain. It's been exciting and confirming, I'm on the right path.
Don't discount anything. My Perrin Technique therapist calls me a seeker of knowledge but who else is going to find the way to fix me?

I'm really chuffed you got better. Really.

[slab_happy]

My experience with Doctors when diagnosed with CFS was shit. Had multiple blood tests, all negative over long period. Diagnosis and then a shrug and goodbye. There is little support or any idea of a plan for recovery via doctors on the NHS. Not sure if the same for long covid but I suspect as much.

My experience entirely with long covid. I have a private MECFS diagnosis now.

I gave up on the GP a while back.

Glad you found something that helped you Kelvin, how are you these days?

I completely sacked off the doctor too, one of the best things I ever did to help my recovery, it was largely a negative experience.  To offer some light at the end of the tunnel, I am largely better from CFS. It took a long time - approx 5-6 years - and was a lot of work. I had a huge amount of help from my partner researching stuff online and trying out so many different approaches. The biggest takeaway is that there is no simple way out of a chronic health condition, it's not a one size fits all, there is no magic pill. You have to find out what works for your own set of symptoms which are never the same as anyone else's.

And to everyone putting down positive thinking, if you can't stay positive when you are at your lowest ebb and believe there is a way back then you are truly fucked. You will continue the downward slide and end up in a bad place. Although not in my personality I did manage to remain positive and I think it was a huge part in me getting better.

For me, I have been very triggered by emotional triggers and stress. They have set me back and in some cases caused temporary relapses so although it's not "all in my head", these effects should never be underestimated.

As someone with severe and treatment-resistant depression (and who had ME/CFS in my teens, and has a bunch of other fun chronic conditions to deal with), I'm strongly in favour of trying to focus on the positive whenever possible.

I know how easy it is to get stuck in a spiral of despair, and it never helps anything.

The trouble is when you get told that if your symptoms aren't getting better, or are getting worse, it must be your fault because you're not thinking positively enough. Or that you'd be guaranteed to get better if only you think positively enough.

(Which is, ironically, a thing that tends to make you feel worse.)

I also think it's important and healthy as a human being to be able to acknowledge that sometimes things are kind of shitty and that you feel frustrated and awful about it. Sometimes you just need to shout "THIS SUCKS AND IT'S UNFAIR AND I HATE IT" for a moment, and then you pick yourself up and get on with dealing with it, you know?

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

[kelvin]

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

I spend a lot of time on the often toxic Twitter and 'toxic positivity' comes up all the time. Mostly in reference to family or friends trying to jolly you along, which is frustrating as f@#k. I speak from personal experience and nothing triggers me more
It's hard to hear it's going to be okay when you actually have no idea if it is.
I think perhaps it's best I clarify that when I talk about positivity, it's that internal never gave up attitude I have inside of me. I'm sure everyone has a very different position on what internal positivity is as it relates to them personally.
If you suffer from serious depression like my sister and stepdaughter, then it's never going to be as easy - my sister's version of positivity is very different to mine, we spoke at length about this. Hers is far more about managing to tread water.

As Shurt said, recovery is a very personal thing and for me, that has to include positivity because that's been me as a person all my life.

[slab_happy]

People have coined the phrase "toxic positivity" to describe the pressure to only feel and display positive emotions at all times, and discussed how that can lead to blaming yourself if you can't be perfectly positive about everything:

https://en.wikipedia.org/wiki/Toxic_positivity

I spend a lot of time on the often toxic Twitter and 'toxic positivity' comes up all the time. Mostly in reference to family or friends trying to jolly you along, which is frustrating as f@#k. I speak from personal experience and nothing triggers me more
It's hard to hear it's going to be okay when you actually have no idea if it is.
I think perhaps it's best I clarify that when I talk about positivity, it's that internal never gave up attitude I have inside of me. I'm sure everyone has a very different position on what internal positivity is as it relates to them personally.
If you suffer from serious depression like my sister and stepdaughter, then it's never going to be as easy - my sister's version of positivity is very different to mine, we spoke at length about this. Hers is far more about managing to tread water.

As Shurt said, recovery is a very personal thing and for me, that has to include positivity because that's been me as a person all my life.

Very much agreed -- I think there's a huge difference between trying to find that internal source of resilience and survival, whatever that means for you personally (and yeah, some days treading water is a win), and the external pressure to "think positive! It'll all be fine!".

[shurt]

Hey Kelvin, I'm really glad to hear you are on the up and feeling like you're going to get back to some semblance of normality. It sounds like it's taken a lot of work which I get. I'm glad you very found some support on here. It's much needed and fuck me you find out who your friends are.

slab_happy
I'm not really too sure how it went from my post to toxic positivity compete with wikipedia link but there you go. I'm glad it was sort of cleared up afterwards. I decided right from the start that I wasn't going to be ill forever and was going to throw everything at getting better. That to me was being positive. I've had depression on and off for over 30 years so am hardly the type to be telling people to slap on a smile.

[mrjonathanr]

Hi Shurt, given the issues raised by Monbiot’s article and the physiological vs psychological debate around CFS, slab-happy’s post makes perfect sense. I didn’t read any criticism of your post in that, but a differentiation from some of the less helpful ideas around the role of psychological outlook in recovery.

The Guardian published letter responses to the article, for those interested.
https://www.theguardian.com/society/2024/mar/15/why-mecfs-is-still-so-poorly-researched-and-treated

Most are positive, including one from Dr Charles Shepherd. Shepherd has been medical advisor to the ME Society for many years and written and researched extensively on the condition.
https://me-pedia.org/wiki/Charles_Shepherd

[webbo]

I don’t know whether this has been mentioned on here but the Nuffield have a free long Covid scheme. I don’t know any details but it is mentioned when you ring their hospital switch board.