To think GPs are treating Covid patients like a bad 60s sitcom

[Isaidnomorecrisps]

Thousands of us have what the papers call “long-tail Covid”. I’m on two online sites and it’s generally people our age, often really fit to start with but who’ve been hit hard with the virus and maybe secondary infections - they’re saying possibly 5-10% - and generally didn’t end up in hospital.

It lingers and comes back again, every couple of weeks for me. It’s scary - you start over again.

AIBU to have hoped the NHS would have come up with guidance on this? GPs, with no basis anyone can work out, are (this is the 60s bit) handing out anti-depressants like sweets to us, calling it anxiety and ignoring our descriptions. What on earth is this about and why isn’t it negligence?

We need support, and research into what’s happening - there’ll be many thousands more soon. (For what it’s worth, around the three month mark lots of us started getting better, but till then it was basically stay in bed and hope for a decent employer.....)

Sellfridges,

which health systems in other countries do you think do cope well with the chronic diseases you have in mind? I am genuinely interested. I see some other countries are better resourced, some have different priorities and some medicalise some conditions that the UK doesn't but most of the chronic or nebulous conditions that I've seen don't have clear treatments leading to resolutions in the UK seem to have no clear treatments in other countries.

@ChubbyPigeon As far as I know, G.F will always show up on blood tests for the rest of your life? I may be wrong.

When my G.P rang me 4 years ago to discuss, her first question was "Have you ever knowingly had G.F?"

As I hadn't had it before, was displaying symptoms and had a positive test that week, she said then it is likely to be this current episode (I think, bit hazy after 4 years)

@Isaidnomorecrisps, finally, this useful article below in the Charted Society of Physiotherapy’s magazine, Frontline, was printed this month. I appreciate at the moment physiotherapists will be busy and you may not be able to access one at present but if you are still not well by the time you can, you could give them a copy of this article.

“As we enter the next phase of pandemic response, physiotherapy services are looking to support people recovering from Covid-19. One of the most prevalent problems is fatigue. Fatigue following a viral infection is common, but for some people the symptoms may persist for months and impact on their quality of life. We asked Physios for ME (Karen Leslie, Dr Michelle Bull, Natalie Hilliard and Dr Nicola Clague-Baker) for the low-down on post viral fatigue syndrome.

What is post viral fatigue syndrome (PVFS), and how do I recognise it?

PVFS is a persistent state of ill health following a viral infection. Symptoms include fatigue, loss of energy, muscular aches and pains, intermittent flares of viral symptoms and an inability to return to previous levels of activity. PVFS is not the same as being deconditioned. Ignoring or exacerbating the symptoms may worsen them.

If there has been a sustained change to daily life and if rehabilitation isn’t progressing as you think it should, consider PVFS.

Where, say, a person may have returned to work but uses their weekends to recover, or is struggling even with basic daily tasks, it’s worth considering PVFS.

With PVFS there is a possibility of development into Myalgic Encephalomyelitis (ME – often known as chronic fatigue syndrome or CFS). The link between severe viral infection and ME is clear. Previous outbreaks of SARS and Epstein Barr saw a 10 per cent rise in the number of patients diagnosed with ME1,2. ME affects approximately 250,000 people in the UK, more than multiple sclerosis and Parkinson’s disease combined. Around 25 per cent of patients are completely bedbound.

If I suspect someone recovering from Covid-19 is developing PVFS, what should I do?

Adapt to provide pacing strategies to work within energy levels, rather than push beyond limits. And make sure you are clearly communicating your concerns with the multidisciplinary team for ongoing monitoring and support.

The best approach is to ensure adequate:

rest
nutrition
sleep
How do I know if a person with PVFS has developed ME?

The hallmark feature of ME is post-exertional malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.

Clinical signs to look for include:

post exertional malaise

persistent reported fatigue that substantially reduces activity levels
tiredness after sleep
muscle and/or joint pain
cognitive disturbances (memory, attention, information processing)
sensory disturbances (photophobia, sound sensitivity)
orthostatic intolerances (inability to tolerate anti-gravity positions)
ongoing flu-like symptoms, swollen lymph glands, sore throat.
Research into the exercise physiological processes behind PEM is ongoing, so far finding3:

increased intracellular acidosis in exercising muscles and reduced post-exercise recovery from exercise
abnormally low anaerobic threshold during maximal testing
reduced maximum heart rate, maximum oxygen consumption, cardiac output and blood pressure on maximal exertion.
Such adverse physiological processes can be temporary, but for many they can result in a progression of the severity of their condition.

What should physiotherapists do?

The challenge for physiotherapists who are working to rehabilitate people recovering from Covid-19 is to identify those who start to display symptoms of ME so that they can adapt their approach to avoid triggering PEM and worsening the condition.

Careful questioning and an awareness of their history may help to identify potential new ME patients. It may be several months before their symptoms are accurately identified.

A standard physiotherapy programme of graded exercise, no matter how gentle it begins, always hinges on the principle of progression, and will therefore always end up at a level that triggers PEM. Up to 80 per cent of ME patients who have attempted some form of graded exercise have reported a deterioration in their condition4, and NICE Guidelines are currently under review after a campaign to remove graded exercise from any recommendations.

So physiotherapy that might work for one group of post Covid-19 patients may end up worsening another group who have gone on to develop ME. This is why we need to continually evaluate our treatments and monitor patients closely, as well as update our knowledge base around this condition and its management.

More information

the ME Association.
We are Physios for ME
References:

1. Hickie, I., Davenport, T., Wakefield, D., Vollmer-Conna, U., Cameron, B., Vernon, S. D., Lloyd, A. (2006). Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ, 333(7568), 575.

2 . Moldofsky, H., & Patcai, J. (2011). Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC neurology, 11(1), 37.

1. Myalgic Encephalomyelitis - Adult & Peadiatric; International Consensus Primer for Medical Practitioners
2. Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes;Executive Summary from Forward ME

www.csp.org.uk/frontline/article/we-answer-your-questions

"It’s depressing how many posters are willing to excuse this behaviour from HCP"
Im not excusing my behaviour I'm explaining it. Do yo think we want to work like this? Do yo think we go home at the end of the day knowing that we having done the best job we can and feel satisfied of course we dont. Most people have no idea what's going on in the NHS I work approximately a 13 1/2 hour day I get no break, no drink and I never get to the loo, I priorities patients because there's not enough of me to go round the very sickest; the critically ill children and their families take up my time and efforts over everyone else and they take up a lot of time because that s how it has to be and should be and in their shoes that is what you would want. the rest gets what left, the least ill get the last time. Gps are going the same they will have people who are at home and very unwell, sick children, the worried well, those with long standing chronic illness, they too prioritise. It's crap if you want to know but that is how it has to be. I frequently tell people what an impossible situation we're all in many think I 'm exaggerating. Our junior doctors were so brave they went on strike in their determination to tell you how crap it was, our media and government vilified them and people who knew nothing jumped on the band wagon , our professional bodies the BMA the RCN tell you how crap it is and still you have totally unrealistic expectations, the KIngs Fund tells you we're so desperately underfunded and still people have totally unrealistic expectations. Your and my NHS the one that someday clapped forts collapsed the staff are broken, we work with massive financial cuts, poor or non existent equipment not just PPE but vital equipment/medicines that will be part of that keeps you alive, back door privatisation, appalling and illegal working conditions and you think were making excuses for our behaviour? Their whelming majority of us believe in the NHS what do what we offer and want to do our very best but increasingly this is becoming impossible. I predict the toll on staff from Covid19 will be massive, many are voicing concerns about our mental health, many will become ill go off on long term sick and or leave this will be another another massive blow for the NHS so Im not excusing of NHS HCPs I'm explaining it.
@Lightsabre what tests would you like to have done? Ultimately when resources and time is limited there is only any point in doing a test if you will act upon abnormal results. You have to accept that medicine is about treating the most likely explanation if it looks like post viral fatigue syndrome or something similar which ultimately has no treatment then that is what most GPs are going to assume it is.It is not realistic to send everyone for a range of test on the off chance its something rare. But quoting form another poster I were presenting at my GP with "symptoms as severe as breathlessness, plummeting SATS, chest pain and fluctuating heart rates are presenting week after week" then I know I would be seen be it a virtual appointment or a face to face one, assuming these same tests could be observed by my GP then the initial tests" wouldn't "show clear" and it is likely I would be referred to a specialist.
We frequently see children where parents have bought O2 sats probes of Amazon report their child's sats re 85% or something similar but when we use hospital quality equipment cant find the same thing, parents often say there child is not drinking but is happily playing on the floor with a drinks cup I their hand and has regular wet nappies which tell us otherwise, Im not criticising these parents they are worried about their child an want reassurance but frequently when we do tests and an examinations we cant just simply cant find the same things and therefore morally, ethically and financially we cannot subject them to a whole barrage of tests when we can find very little wronger advise go home and come back if you don't get better or worsen. Do we miss serious things things on first presentation yes we do which is an absolute tragedy and for us causes lots of reviews of what we did and did something go wrong and what can we learn but only in a very tiny handful.

Lol. Yabu.

Youre wasting the gp's time. There's no treatment for lingering post viral symptoms.

@tiredwardsister if the blood tests my GP has asked me to come in for are “only going to result in needing iron tablets” then why is the GP insisting I come in for them? I just had full bloods 6 months ago and I have additional vitamins and minerals for low levels due to already having ME.
I understand that you wish to explain that HCP’s are tired/overworked etc but we are not talking about “you”.
We are talking about GP’s categorically dismissing concerns, which makes a bad situation worse. Hindsight is wonderful but 2 months ago, people who were previously super fit didn’t know what PVF was.
If my GP can’t do anything then I’d be happier if they said so rather than telling me that it probably wasn’t covid and I can’t “prove” it was. I was breathless on the phone to 111 and they sent an ambulance. This was before the Nightingale hospital opened.
There’s probably also some trauma from living through the pandemic, getting Covid (or extremely similar viral infection whilst covid was doing the rounds, that had the same symptoms) and still being ill after months of being told “you’re wrong” and “you should be better”.
We are the herd immunity experiment and we’re not yet able to go back to work. We might be a bit tired, emotional and fucking annoyed.

tiredwardsister

The problem with this is the myth the NHS is underfunded. It isn’t. It is however, criminally inefficient. Any attempt to suggest alternative delivery models is shut down by spurious comparisons with US which is more shit but is not the only other model. Australia and France both have significantly better approaches and in France this involves patients paying for GP appointments with safeguards for the vulnerable which work well. Some of the problems you mention would be solved if people paid to see a GP (and I also bought a pulse oximeter after taking DS2 to A&E twice with breathing difficulties when he was little only to find his O2 levels were fine. Next time he had the symptoms I measured his O2 at home and saw he didn’t need medical attention so didn’t take him in...it works both ways).

There have also been many threads on here by HCPs bemoaning the inefficiency they see every day.

But none if this remotely excuses the prevailing trend of prescribing ADs, most often to women, that don’t clinically need them. There is a drive just now to back away from opioid use...I predict that 5-10 years from now we will see a similar backlash against SSRIs, and women will be fobbed off with some new “happy pill”.

Actually, treatment is still being developed, but in a variety of situations GP's are being given clinical advice to use anti-depressants. Some anti-depressants may protect against cytokine storms that overwhem the immune system and lead to hospitalisation or even death. Beyond that, depression is a known outcome of post viral syndrome, and we know that taking anti-depressants early in such cases can reduce or eliminate the impacts, leading to positive long term outcomes.

Unfortunately not even the experts know what works and what doesn't yet. They have ideas but nothing beyond educated guesses and observations. So I am afraid that expecting your GP - who is a medical generalist - to have an answer to something that nobody has the answer to is, yes, unreasonable. It's as frustrating for them as it is for you.

@Guylan I could hug you - thank you so much.

I can see from everyone’s responses how complicated this is.
The Dutch survey is so surprising too. 85% felt well before Covid and our endless symptoms now. I was really fit before this: two kids, full time job, up and down stairs all day, felt so lucky - now I’m scared, have no idea how to get well, a GP who puts the phone down on me and my (great otherwise) employer has said I’m not allowed back in the building because on Teams I’m clearly struggling to breathe, even after 2 negative tests in the last 3 weeks.

Anyway, enough about me!!
I feel so sorry for everyone in this situation, ME or PVFS.

Ostinato,

Any evidence beyond anecdote that 'The problem with this is the myth the NHS is underfunded. It isn’t. It is however, criminally inefficient.'

I'm not defending the NHS however I see regarding funding from
www.bmj.com/content/367/bmj.l6326

'The UK spent the least per capita on healthcare in 2017 compared with all other countries studied'

and regarding efficiency from

www.nuffieldtrust.org.uk/news-item/nhs-receives-mixed-scorecard-in-major-analysis-of-international-health-systems

that the NHS is 'relatively efficient'.

Obstinato,

Again, I'm not defending the NHS as I face many of its faults first hand but I'd love to see your evidence about inefficiency and sufficiency of funding of the NHS.

Now the devil is in the detail of different studies and this is a politically loaded area but an extract of the US-based Commonwealth Fund, ranked the British health system as the best of 11 well-off countries. The NHS performed better than its counterparts on fairness, ease of access and administrative efficiency with worse outcomes for people with potentially fatal diseases fell short of those in western Europe and Australia.

Spending as a share of GDP is lower than in many western European peers: the government has spent just over 7 percent of GDP on public health over the relevant period.

I was very very ill with what I am sure was Covid mid Jan, off work for 5 and a half weeks, and still struggling with periods of high temp, bone crushing exhaustion, headaches, breathlessness that is different to my usual asthma symptoms. I am terrified that this is how my life is going to be now.

@Isaidnomorecrisps, thank you. I feel for you. I remember how hard it was to know there was something wrong and for it to not be acknowledged.

I can only urge you to pace your activity and rest and ideally find a GP who understands about the possibility of either post viral fatigue or even post viral fatigue syndrome - many don’t as they haven’t been given good training on it - if it lasts even longer and the need to manage it well now at the beginning balancing activity and rest and not pushing beyond your individual energy reserves. This will give you the best chance to make a full recovery. Ideally a GP would advise your employer the importance of you being given the time to convalesce and recover before returning to work. Post viral fatigue syndrome can last for quite a while but good management now gives you the best chance to not become chronically ill or lose even more functioning.

Below are links to two US articles on those who have had Covid19 and are finding their bodies are taking a long time to recover. The Washington Post article discusses how some in the medical profession are aware that some could develop PVFS. I wish you all the best. Feel free to inbox me anytime.

www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html

www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/

@babymidgetgem

I was very very ill with what I am sure was Covid mid Jan, off work for 5 and a half weeks, and still struggling with periods of high temp, bone crushing exhaustion, headaches, breathlessness that is different to my usual asthma symptoms. I am terrified that this is how my life is going to be now.

Feel for you. I would say the same to you as I have to isaidnomorecrisps in my comments. All the best.

What do you want your gp to do?

@tiredwardsister

I'm not upset I just think most people have no idea what's going on on the NHS. Yes "It takes minutes to acknowledge someone is ill even if there are no biomedical treatments" but do you have any idea how many patients there are out there or how desperately short of time many NHS staff are? From my own personal experience and that of colleagues NHS staff often don't have time to communicate and update properly relatives etc of those who are dying. We don't want to do our jobs like this, but we are firefighting and prioritising (as our training has taught us) in an ever increasingly difficult situation. When I started nursing (many years ago) there was a poem on the wall of an ward talking about what we'd like to do, how we'd like to spend time with patients including listening to their worries etc but basically "there are too many of you and not enough of us". That was 30+ years ago now it's even worse. Few can hand on heart that they are consistently going the care that they want too.

@tiredwardsister, I am actually talking about what kind of basic support GP’s can offer when a few of their post CoVid patients who never needed thankfully to go to hospital find their energy levels and other symptoms are still v poor beyond a few weeks. I am not talking about nurses and doctors at hospital.

Thank you for all you are doing on the frontline.

More on the failure to track recovered cases in the Guardian:

www.theguardian.com/world/2020/jun/18/health-experts-criticise-uk-failure-track-recovered-covid-19-cases

“Britain is an outlier internationally in not reporting the number of people who have recovered from Covid-19 alongside statistics on deaths and numbers of identified cases. Chile is the only other nation not to share this information out of the 25 countries with the highest reported incidence.

A failure to monitor those who test positive for Covid-19 outside of hospital has left people feeling unsupported and alienated from the health system, the experts say. There is concern that because the majority of community cases have not been logged in patient records, it will be more challenging to research the long-term consequences of the disease.”