Has anyone diagnosed ME also received a Long Covid diagnosis?

[livinglighter]

As the title suggests, I wonder if anyone diagnosed with ME who caught Covid has now also been diagnosed with Long Covid?

I was sick last year with what I believe to be Covid, but my doctor at the time said a lot of the symptoms I reported before were similar to Long Covid and left it as that. Since then I've seen the odd person state they are diagnosed with both and would like to question if my doctor was correct in overlooking it.

 

[GlassCannonLife]

I believe @BrightCandle had milder ME that got worse from COVID, not sure if they've been diagnosed with LC though.

 

[Rvanson]

Negative. I have not taken ANY "vaxxines" and tested negative three times. I don't wear masks unless I have to.

Furthermore, I do not like the "longhauler" handle, as it denigrates all of us who have stayed alive with ME/CFS for years.

Nothing will come of this that will benefit us whatsoever, so we just need to get over that part now, not later.

 

[BrightCandle]

I believe @BrightCandle had milder ME that got worse from COVID, not sure if they've been diagnosed with LC though.

I live in the UK, getting a diagnosis for anything is impossible because the NHS is shambolic display of utter clinical negligence based on prejudice. My doctor wont even talk to me for the past 2 years so getting a diagnosis for Long Covid would be a challenge. I also had covid before it was sexy, in February of 2020 after my friend caught it in December 2019! I know that is a bit before the usual March 2020 but the X ray of their lungs leaves no doubt, they nearly died from it too and I was just unwell with a loss of smell and taste. The NHS has diagnosed just 28k long haulers, the ONS estimates there are 2 million, on that measure alone the chance you have a diagnosis at all is vanishingly small even if they treated ME like a real disease.

I was mild for about 5 years (HB 80% but with terrible migraines), mostly just headaches, dizziness and some fatigue. I was told to exercise, do CBT and Vestibular training. 8 weeks into the exercise programme I crashed hard (HB 15%) and gained all the other symptoms of ME in a couple of months. I recovered to moderate (40%) and then I caught covid 6 months later, it did nothing to me straight away but I crashed shortly after the infection and become very severe (HB 5%). Was like that for 12 months. Then gradually this year improved after starting HASD/BCAA/Anticoagulant/Probiotic and now moderate again and improving (HB 40% currently).

I have zero diagnoses for anything I have, I have 170 appointments with doctors and no diagnoses and my medical record has less than a third of my symptoms even listed despite starting every appointment with a sheet summarizing my condition.

 

[livinglighter]

@BrightCandle

A disinterested and poorly informed GP is a roadblock to receiving the type of support we require. I had all the same problems as you before changing mine. It took me years to recognise the problem while I functionally declined because my doctor never told me they thought ME/CFS is a mental illness until years later. I then had to ask the practice manager if they have any GPs who understand ME as a physical illness. Luckily, they had one! The practice manager said I will always have difficulties if my GP considers the problem psychosomatic and told me to change practices if they don't have GP's with the required awareness.

It isn't easy, but all I can advise is to try and register under a doctor who will help as much as possible. Try contacting local support groups to see if they keep a list of recommended GPs and contact surgeries directly, including your current one. It does sound like COVID made things worse for you and it should be at least investigated.

 

[bensmith]

I started me after covid. So i have both. Never formally diagnosed. But ive been treated for both.

 

[livinglighter]

I started me after covid. So i have both. Never formally diagnosed. But ive been treated for both.

Thanks, Ben. Hopefully, some drugs will become available for LC so hang tight and rest well. Has Long Covid been mentioned in your medical notes when you were treated for it?

 

[bensmith]

Yes but likely as,

“patient enters as self reported long covid” etc.

 

[livinglighter]

Yes but likely as,

“patient enters as self reported long covid” etc.

You can always request a copy of your medical records to see for yourself and decide what to do next based on what you see. How are they currently treating long covid where you are?

 

[bensmith]

oklahoma, usa.

not treating.

its fine i see no point in it. Ive read some of my records before. Medicine is mostly bullshit and a scam.

 

[Da Funk]

I have been curious to know if being an ME sufferer, I'm also susceptible to Long Covid. Although LC is obviously an umbrella of conditions, symptoms seem very similar for those who caught "mild" Covid and moved on to suffer Long Covid.

Up until now I've managed to avoid Covid, (unless I've caught it asymptomatically), so it's currently an "unknown" for me.

 

[livinglighter]

I have been curious to know if being an ME sufferer, I'm also susceptible to Long Covid. Although LC is obviously an umbrella of conditions, symptoms seem very similar for those who caught "mild" Covid and moved on to suffer Long Covid.

Up until now I've managed to avoid Covid, (unless I've caught it asymptomatically), so it's currently an "unknown" for me.

According to one of my carefully reworded NHS diagnosis letters ME is also an umbrella of ‘symptoms’.
If you read Dr Hyde’s work you will see it is because we have multiple conditions.

Here in the UK you can still have LC following a mild COVID infection. I wouldn’t suggest anyone saying they may have suffered an asymptotic infection as then doctors may want to rely on a positive antibody test more.

A negative antibody test doesn’t mean you haven’t had COVID because some people do not produce a strong enough antibody immune response for the test to detect it.

To update my original post, so far I have read about other pwME diagnosed with LC . However, a lot of doctors do not expect long COVID to last long and will after some time refer to the illness as ME/CFS.

A private doctor can also diagnose LC and some who see ME patients work in infectious diseases so it’s all the more possible to be double diagnosed.

ME patients are at risk of not receiving an LC diagnosis. Even if technically you can have both, as doctors think ME is hypochondrias. Obviously people with hypochondrias can also fall ill with viruses that lead to physical illnesses, so LC shouldn’t be ruled out due to a doctors assumption of the patient having an pre existing anxiety disorder.

 

[ChrisD]

I've had ME since 2016, diagnosed 2017/18 by UK NHS 'specialist service'. I believe I had C ovid in Sept 2020; which involved a 10 day fever followed by a month of PVF on top of usual ME. Then throughout 2021 i didn't feel quite back to where I was and had some additional histamine issues etc.

End of October 2021 I caught what I thought was the so called supercold from my family who all had a bad cold. After 5 days of the bad cold, I got uncomfortable chills and shivers for 3 days and the onset of chest pressure/tightness/heaviness, blood pressure spikes, internal tremors, loose stools etc. And much more.

In A and E they were pretty dismissive until I had the chance to detail my symptoms, and then they were very confident that I had had C ovid and my Lat Flow negative wasn't enough to rule out (told I should have done a pcr, even though I was very housebound).

I was discharged with ME exacerbated by PVF, with a few references to how the virus could be covid based on symptoms.

it's really annoying and confusing because on one hand they were sure it was covid, and after my researching of long Cov symptoms, I am 100% sure. But of course they have left it open ended which leaves it open to interpretation to others. For example, my GP said "it'll be hard to refer you to the Long cov clinic because of your long history of anxiety about fatigue and Lyme disease".

So I haven't got a concrete diagnos is yet but I'm just passing the 12 week point so maybe I will soon

 

[livinglighter]

I've had ME since 2016, diagnosed 2017/18 by UK NHS 'specialist service'. I believe I had C ovid in Sept 2020; which involved a 10 day fever followed by a month of PVF on top of usual ME. Then throughout 2021 i didn't feel quite back to where I was and had some additional histamine issues etc.

End of October 2021 I caught what I thought was the so called supercold from my family who all had a bad cold. After 5 days of the bad cold, I got uncomfortable chills and shivers for 3 days and the onset of chest pressure/tightness/heaviness, blood pressure spikes, internal tremors, loose stools etc. And much more.

In A and E they were pretty dismissive until I had the chance to detail my symptoms, and then they were very confident that I had had C ovid and my Lat Flow negative wasn't enough to rule out (told I should have done a pcr, even though I was very housebound).

I was discharged with ME exacerbated by PVF, with a few references to how the virus could be covid based on symptoms.

it's really annoying and confusing because on one hand they were sure it was covid, and after my researching of long Cov symptoms, I am 100% sure. But of course they have left it open ended which leaves it open to interpretation to others. For example, my GP said "it'll be hard to refer you to the Long cov clinic because of your long history of anxiety about fatigue and Lyme disease".

So I haven't got a concrete diagnos is yet but I'm just passing the 12 week point so maybe I will soon

Can you clarify if you’re doctor is waiting 12 weeks to see if you still report symptoms before confirming LC?

Hopefully you can get some of your family or friends to support you during your appointments, that may help.
You can also show them the guideline saying ME is a neurological disorder. Anxiety related fatigue is psychiatric - ask them to explain what they mean. But if you just want to concentrate on a LC diagnosis going forward then get support from friends and family.

I’m attending my LC appointment with family and will link my symptoms to obvious known pathologies such as injury related brain disturbances.

 

[msf]

I've had ME since 2016, diagnosed 2017/18 by UK NHS 'specialist service'. I believe I had C ovid in Sept 2020; which involved a 10 day fever followed by a month of PVF on top of usual ME. Then throughout 2021 i didn't feel quite back to where I was and had some additional histamine issues etc.

End of October 2021 I caught what I thought was the so called supercold from my family who all had a bad cold. After 5 days of the bad cold, I got uncomfortable chills and shivers for 3 days and the onset of chest pressure/tightness/heaviness, blood pressure spikes, internal tremors, loose stools etc. And much more.

In A and E they were pretty dismissive until I had the chance to detail my symptoms, and then they were very confident that I had had C ovid and my Lat Flow negative wasn't enough to rule out (told I should have done a pcr, even though I was very housebound).

I was discharged with ME exacerbated by PVF, with a few references to how the virus could be covid based on symptoms.

it's really annoying and confusing because on one hand they were sure it was covid, and after my researching of long Cov symptoms, I am 100% sure. But of course they have left it open ended which leaves it open to interpretation to others. For example, my GP said "it'll be hard to refer you to the Long cov clinic because of your long history of anxiety about fatigue and Lyme disease".

So I haven't got a concrete diagnos is yet but I'm just passing the 12 week point so maybe I will soon

I would try to get a new GP/practice. The concept of anxiety about fatigue shows they arent capable of thinking critically about complicated subjects (or they would realize it makes no sense), and also suggests that they probably dont have much empathy either.

 

[msf]

I would like to ask the GP what they thought they meant by that phrase. I suspect they were using it without thinking about it, which is worrying in someone society has spent a lot of money educating. Since anxiety and fatigue are both perceived rather than objectively quantifiable, maybe you could ask them why they feel confident in diagnosing you with anxiety but not with fatigue. I really find this kind of doctor quite depressing - luckily the unthinking ones will be replaced with AI one day, and we can save society a lot of money that could instead be spent on actually helping sick people.

 

[Da Funk]

To update my original post, so far I have read about other pwME diagnosed with LC . However, a lot of doctors do not expect long COVID to last long and will after some time refer to the illness as ME/CFS.

A private doctor can also diagnose LC and some who see ME patients work in infectious diseases so it’s all the more possible to be double diagnosed.

Can't quite remember the exact quote, but I saw one doctor on TV admit that "Anyone not recovering from long Covid in more than a year will likely move to more pyschological based treatments". Which looked like an open confession that they sooner or later will start classing LC as a pyshological disorder if you're still suffering after what'll be "permitted", no doubt to save money on actual research and minimise treatment to save money, and leave people on the scrap heap, like us.

But this time round, will there just be too too many sufferers to ignore?

 

[livinglighter]

Can't quite remember the exact quote, but I saw one doctor on TV admit that "Anyone not recovering from long Covid in more than a year will likely move to more pyschological based treatments". Which looked like an open confession that they sooner or later will start classing LC as a pyshological disorder if you're still suffering after what'll be "permitted", no doubt to save money on actual research and minimise treatment to save money, and leave people on the scrap heap, like us.

But this time round, will there just be too too many sufferers to ignore?

@Da Funk Unfortunately, given some more recent information I've read it seems the doctor is correct.

There is a new NICE guideline in the works called Rehabilitation for Chronic Neurological Disorders Including Acquired Brain Injury that prohibits ME/CFS and Long Covid because there is already ‘rehabilitation’ for both.

I haven't really read enough about it to understand why ME and LC should be considered as conditions not requiring the same chronic neurological or/and brain injury rehabilitation.

 

[vision blue]

?[/QUOTE]

But this time round, will there just be too too many sufferers to ignore?

Unless the researchers themselves or lawmakers or those who grant money personally have long covid then may not matter how big the number of afflicted are.

Maybe things like mass hysteria will get invoked for the numbers. It will be the lattest fashionable yuppie flu met with lots of eye rollong when former fiends say sorry i cant help
You move been sick with long covid. Ne t joke for a new generation

I already know folk who because they recovered fine from covid are questioning whether long covid is real. Hell before some people got covid they doubted it was real. Some people even doubt the holocaust...

 

[Da Funk]

?


Unless the researchers themselves or lawmakers or those who grant money personally have long covid then may not matter how big the number of afflicted are.

Maybe things like mass hysteria will get invoked for the numbers. It will be the lattest fashionable yuppie flu met with lots of eye rollong when former fiends say sorry i cant help
You move been sick with long covid. Ne t joke for a new generation

I already know folk who because they recovered fine from covid are questioning whether long covid is real. Hell before some people got covid they doubted it was real. Some people even doubt the holocaust...

Hmm. Human nature, not always the best.

And true, there's 250k ME sufferers in the UK, I believe. You would think that would be impossible to ignore. We need to fight our corner, but we don't have the energy for it, of course.