Article Express: ‘I lost half my blood’: Woman recalls diagnosis of ‘mystery illness’ - it affects millions

[Sly Saint]

Pamela had to be hospitalised after she started regularly feeling under the weather. It wasn’t until later that Pamela was diagnosed with Chronic Fatigue Syndrome (CFS), a chronic condition commonly associated with overwhelming fatigue. A lack of research and understanding of the condition often sees it get stigmatised as laziness, but Pamela is now using her experience to help patients suffering from Long Covid.

The condition - also known as myalgic encephalomyelitis - is defined by the NHS as a “long-term condition that causes persistent fatigue that doesn’t go away with sleep or rest and affects everyday life".

The healthy body continues: “It is most commonly affects the nervous system and immune systems.

“Sometimes it is diagnosed as a post-viral syndrome.”

CFS, which affects an estimated 250,000 people in the UK, cannot be cured.

https://www.express.co.uk/life-styl...-syndrome-symptoms-feeling-tired-all-the-time

If only the NHS website had some decent info on it

 

[Wyva]

The ending is perfect too:

Treatments to alleviate symptoms are limited, with doctors limited to prescribing over-the-counter painkillers and antidepressants.

This includes cognitive behavioural therapy (CBT) and energy management, where patients are given advice about how best to use their energy without exacerbating symptoms.

Well, at least they got the pacing part right.

But yeah, since this is what the NHS website says:

There are a number of specialist treatments for ME/CFS.

Cognitive behavioural therapy (CBT)
If you have mild or moderate ME/CFS, you should be offered cognitive behavioural therapy (CBT).

CBT is a talking treatment that can help you manage ME/CFS by changing the way you think and behave.

Your CBT therapist will ideally have experience of dealing with ME/CFS and treatment will be offered on a 1-to-1 basis.

Using CBT does not mean ME/CFS is considered to be a psychological condition. It's used to help people with a variety of long-term conditions.

I agree that as long as this is not accurate, there will be similar articles over and over in the media as many journalists will turn to the NHS for info, expecting it to be factually correct.

 

[Ash]

I am too I’ll to read this but why and how, did she “lose half her blood” ?

 

[MeSci]

I couldn't find it - the site was deadly slow for me so I'm not sure whether it was in the article, but I think that there is evidence for reduced blood volume in ME/CFS. I don't think it is usually halved though!

 

[Snow Leopard]

I am too I’ll to read this but why and how, did she “lose half her blood” ?

An infection after tonsil surgery lead to a wound that kept bleeding.

 

[Forbin]

Not surprisingly, you can die from losing one-half to two-thirds of your blood. I actually would have guessed that the threshold was lower than that. The percentage is probably constant, but the volume would vary with body size.

https://simple.wikipedia.org/wiki/Exsanguination

 

[Ash]

Thanks all!

 

[Wyva]

I just saw another article about her which talks a lot about her recovery and that she became a "fatigue coach". I looked her up and this is what I've found on her website:

That’s why I set up Pamela Rose Coaching. As a fully qualified performance coach with NLP (Neuro-linguistic programming) I now lead clients, from the point of despair, to getting back on their feet and learning how to cope with life again.

I have gained a particular reputation for helping those who are living with a diagnosis of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (more commonly referred to as ME/CFS). As an ME/CFS Coach I can offer guidance from personal experience, as I was diagnosed with this illness myself ten years ago and have subsequently managed a very successful recovery. Fully accredited by the National Council of Psychotherapists I now work with others who have this condition, to help them with their own ME/CFS recovery.​

Sometimes I wonder if you are not considered fully recovered until you also become an ME/CFS coach.

 

[Arnie Pye]

Not surprisingly, you can die from losing one-half to two-thirds of your blood. I actually would have guessed that the threshold was lower than that. The percentage is probably constant, but the volume would vary with body size.

https://simple.wikipedia.org/wiki/Exsanguination

@Forbin Your link to "simple wikipedia" doesn't work for me.

Another factor in the effects of exsanguination is how fast the patient loses blood. If they have a chronic bleed it can drag things out for a very long time - literally years. This is one of the factors in my own ill health.

 

[Mij]

“I had to have an operation to remove my tonsils which resulted in an infection that caused the wound to burst.

It was like a horror film, I lost half my blood".

 

[Forbin]

@Forbin Your link to "simple wikipedia" doesn't work for me.

Fixed it. I must've forgotten to enter the link underlying the text. I used the "simple" version of Wikipedia because it's more detailed about blood loss in humans. For some reason, the article on exsanguination on regular Wikipedia is mainly about its use as a method of slaughtering animals.