Struggling with chronic fatigue syndrome

[problemsinthemind]

I feel so isolated and so frustrated. There seems to be nothing that can help and I’m really struggling.

it’s been 2.5 years now and it’s getting worse not better. Has anyone recovered ? How long did it take? Is there anything you can recommend? The gp is no help at all , I’m fed up of feeling like this.

That's something at least. 🌺 That's appalling that people can get accused of child abuse just for trying to do the best thing for their seriously ill child. 😢

For anyone who may be interested, the initial findings of the DecodeME study, the biggest genetic study of ME/CFS suffers to date, have been released this evening. Very positive news for us all! x

www.decodeme.org.uk/initial-dna-results/?utm_source=brevo&utm_campaign=Aug%202023%20newsletter&utm_medium=email

Yes, it is appalling & not helped by some doctors still clinging on to outdated beliefs about causation. Thank goodness that research evidence for a biological cause is building up. Hopefully the NHS will be able to help patients effectively one day.

Wonderful news - I’ve been waiting for this!

I’m not sure that it really contains much news?

It suggests that a maximum of 10% of cause might be heredity and remaining 90% environmental.

Also a large majority of gen pop have the same genes but don’t have m.e./cfs or long Covid.
I saw in the news that 10% is a third the heredity level there is for pneumonia, and pretty much the lowest level of heredity there is in diseases.

Well, I’m excited because at last, there is some indication of where to focus research efforts, rather than stabbing in the dark. And none of the genetic signals related to anxiety or depression which is worth noting as so many patients have been told that this what they are suffering from.

@FeralWoman what absolute nonsense. Posts like this is what confuses ME/CFS patients even more.

Trauma, burnout as Well as infection can cause CFS.

@Numberedout At least have the courtesy to quote my post so I know which post of mine you don’t like. The one towards the start of page 3 I assume. Not absolute nonsense. Trauma and burnout don’t cause CFS. As a patient who has had CFS for over 25 years don’t lecture me about CFS patients like I’m not one myself. What’s your stake in this? Are you unwell? A relative unwell?

Yes it can. Read The Body Keeps The Score’

Trauma can absolutely cause chronic fatigue.

And there is a link between CF and ND.

@FeralWoman yes your quote about trauma not causing it is what's made me post. It's highly inaccurate.

That's the first time I have heard this from a sufferer.

Me? Iv been unwell for 5 years and had a diagnosis 3 years ago.

The neuropsychiatrist consultant treating me made it crystal clear that he is of the opinion trauma, burnout and a high adrenaline life have caused my illness.

I think I'll take his opinion over yours.

@ArseInTheCoOpWindow absolutely.

Chronic fatigue is not Chronic Fatigue Syndrome. Don’t confuse them.

I won’t be reading a book. I haven’t read a whole book since I became unwell. My brain doesn’t work like that these days. I used to be a bookworm.

I meant chronic fatigue syndrome!

Trauma and burnout absolutely can cause Chronic Fatigue. However, trauma and burn out do NOT cause ME/CFS. They are different kinds of chronic fatigue and it is important that the difference is recognised.

A neuropsychiatrist deals with mental health symptoms stemming from brain disorders, so yes, an NP is correct in that trauma can cause CF. However, it does not cause ME/CFS which is a neurological illness stemming from a biological cause, NOT mental health.

ME patients who have been diagnosed properly usually are referred to an immunologist, not a neuropsychiatrist, as ME/CFS is not a mental health disorder stemming from a neurological cause. It has an immunological/biological cause.

I have a ND relative who suffers with CF but they do NOT have PEM, there IS a difference.