Many Long-COVID Patients Are Struggling With ME/CFS Symptoms … How long before they're all told some version of " ....it's all in your head..."

[YippeeKi YOW !!]

Normally I'm all about maintaining as positive an attitude as possible and trying to find the bright side, but after .... how many years now? ..... of ME/CFS patients being fobbed off, sometimes contemptuously, with variations of the ".... all in your head ..." theme, and recommendations to psychs and CBT, I'm frankly dubious that, just because there are now millions more of us with the same symptoms, anything will change.

Maybe I'm just having a bad day ...

What do y'all think?

Many Long-COVID Patients Are Struggling With ME/CFS Symptoms …
https://www.scarymommy.com/long-covid-brainstem-dysfunction/?utm_source=yahoo&utm_campaign=feed

"Researchers have noted that functions of the brain stem—including those responsible for maintaining cardiovascular, gastrointestinal, and neurological processes—correspond with symptoms of long haul COVID in many ways.

"About 20-70% of COVID long-haulers report some type of neurological symptoms, including fatigue, insomnia, and brain fog. The neurons that control your sleep-wake cycle, that are responsible for taste, and even those that are implicated in things like anxiety, depression, fatigue, and pain perception are found in the brain stem."​

 

[livinglighter]

Long covid clinics are now operating to treat physical symptoms such as neurological, cardiovascular, respiratory, etc. That's something not being currently offered to ME patients with the same symptoms.

 

[bensmith]

@livinglighter but they still dont have any better treatment. I know a couple who have went. But at least they/we are beleived, sometimes anyway.

 

[YippeeKi YOW !!]

That's something not being currently offered to ME patients with the same symptoms.

I know, right?

It shouldn;t be too hard for medical professionals to connect the dots. At least one would think ....

 

[Abrin]

I know, right?

It shouldn;t be too hard for medical professionals to connect the dots. At least one would think ....

You'd think but I am pretty sure that the first clinics were opened up by doctors that were suffering from Long Covid so of course the doctors are going to believe themselves and take their own symptoms seriously.

It was in their own self-interest to do so. (*sighs*)

 

[livinglighter]

@livinglighter but they still dont have any better treatment. I know a couple who have went. But at least they/we are beleived, sometimes anyway.

You are right here Ben, I think for the most part the clinics that have opened aren’t offering anything better then pacing advice etc. But recently at UCLH, a hospital in the UK, there are clinics to treat patients with dsyautonomia, respiratory and cardiovascular, etc. symptoms. It is the only hospital I know of so far treating physical symptoms.

 

[ruben]

I posted on PR recently about how it's been established that long covid and ME/CFS have the same underlying cause which seems to be a mitochondrial issue. It was on BBC2 science programme "Horizon". I would have thought this MUST be a game changer. We can now stop throwing money at herbal medicine, acupuncture, FMT, lightning process, etc. Everyone seemed surprised how quickly the covid vaccine arrived so maybe worldwide research and treatments will follow quite quickly too.

 

[livinglighter]

I posted on PR recently about how it's been established that long covid and ME/CFS have the same underlying cause which seems to be a mitochondrial issue. It was on BBC2 science programme "Horizon". I would have thought this MUST be a game changer. We can now stop throwing money at herbal medicine, acupuncture, FMT, lightning process, etc. Everyone seemed surprised how quickly the covid vaccine arrived so maybe worldwide research and treatments will follow quite quickly too.

Thanks Ruben, I’ll check out your post about it.

 

[bensmith]

Hopefully they open up the places to the rest of the post viral world soon.

 

[ljimbo423]

Normally I'm all about maintaining as positive an attitude as possible and trying to find the bright side, but after .... how many years now? ..... of ME/CFS patients being fobbed off, sometimes contemptuously, with variations of the ".... all in your head ..." theme, and recommendations to psychs and CBT, I'm frankly dubious that, just because there are now millions more of us with the same symptoms, anything will change.

A link to this quote from the NHS website was posted by another member here-. Calling ME a "neurological" condition. This looks like a big game changer for England !

Neurological conditions
Why is it important?

Long term neurological conditions carry a significant burden to the individual, their families and carers, the NHS, and to society as a whole.


Neurological conditions such as Parkinson’s disease, motor neurone disease, and epilepsy result from damage to the brain, spinal column or peripheral nerves. Some neurological conditions are life threatening, with many severely affecting an individual’s quality of life.


There are over 600 types of neurological conditions, which are broadly categorised into:

• Sudden onset conditions (e.g. acquired brain injury or spinal cord injury)
• Intermittent and unpredictable conditions (e.g. epilepsy, ME, certain types of headache, or the early stages of multiple sclerosis)
• Progressive conditions (e.g. motor neurone disease, Parkinson’s disease, or later stages of multiple sclerosis)
• Stable neurological conditions (e.g. post-polio syndrome, or cerebral palsy in adults)

https://www.england.nhs.uk/ourwork/...ur-work-on-long-term-conditions/neurological/

 

[YippeeKi YOW !!]

A link to this quote from the NHS website was posted by another member here-. This looks like a big game changer for England !

I wouldn't be popping the champagne corks just yet ..... the NHS has proven itself more than able to be impervious to anything it doesn't want to know, hear, understand, or have to act upon ....

But maybe .....

 

[ljimbo423]

the NHS has proven itself more than able to be impervious to anything it doesn't want to know, hear, understand, or have to act upon

Isn't the NHS saying that ME is a neurological condition, a clear admission that ME is a physical disease though, not psychological?

 

[Sledgehammer]

the NHS has proven itself more than able to be impervious to anything it doesn't want to know, hear, understand, or have to act upon ....

Lack of money apparently... Ask any economist. The government is full of them.

 

[YippeeKi YOW !!]

Lack of money apparently... Ask any economist. The government is full of them.

Puts me in mind of the famous exasperated Harry Truman quote, after getting the usual, " ...on the one hand ....", followed by " ..... but on the other hand ...." recommendations from several govt economists:

"Will someone find me a God-damned one armed economist ..."

 

[Sledgehammer]

Puts me in mind of the famous exasperated Harry Truman quote, after getting the usual, " ...on the one hand ....", followed by " ..... but on the other hand ...." recommendations from several govt economists:

"Will someone find me a God-damned one armed economist ..."

See, here we have the Old Etonians. One track mind. Did Economics at Oxbridge don't cha know..
Economics went out with the bath water years ago, it's broken, There really isn't an excuse not to treat the sick who don't have vast amounts of money exept for the fact....They don't have any money