Has anyone diagnosed ME also received a Long Covid diagnosis?

livinglighter

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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.
 

Rvanson

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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

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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.
 
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livinglighter

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@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.
 
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livinglighter

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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

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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.