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We're in Scotland and there is no SIGN for ME/CFS - a form of clinical guidelines . Advice is to follow NICE guidelines , however there is no infrastructure to facilitate this ( previously not a bad thing) . There needs to be ownership of this condition. Having no specialist consultant capable...

Sadly, until all medics have some form of education re ME/ CFS this is all but guaranteed to continue. Unless you yourself or a loved one have experience of ME / CFS there is no hint for a clue about what truly is a parallel universe in which people exist.

Thank you.

Thank you. She didn't expect much , but there's always a glimmer of hope that it might be different.

So so concerning and depressing. Recent rheumatology appointment was a gold plated exercise in gaslighting. Daughter pulled up for having a stick , ( she refuses to use a wheelchair for any appointments after paediatric experience and so pays for this afterwards ) and told to exercise and build...

Non ME aunts ferritin is currently 660mcg/L. She had bloods done last week and they have been repeated so will see if it's confirmed next week. She asked for blood tests as she is constantly feeling tired and is light headed on and off. Practice nurse is taking an interest and discovered kidney...

They are here

Thank you

Thanks for this - very useful . It's an upper endoscopy which may take a biopsy ( as I currently understand it , there is a patient info leaflet through in today's post which I have to look at later ) It's always better to be prepared and we will be in touch with the department prior to bottom...

Thanks @Arnie Pye .

Thank you @Leila

Yes, we will thanks for the suggestion

Thanks @Sasha My daughter is now 21. She has had swallowing issues but these are a bit better. Anaesthetic worries her a bit. I think her biggest fear is her neck muscles seizing during the procedure

Perhaps one for Scott Simpson s medical errors series ?

Thanks @Binkie4 . Good to hear it was not a bad experience. Hopefully it will pan out ok here too.

Thank you . Hopefully her experience may be similar

Thanks. Sadly she's all too aware of the lack of interest. Usually this means she limits what she says as too many symptoms provoke incredulity . FND is being slapped on everything here at moment .

Thanks. It would be good to know how common it is and if it's a feature in conjunction with other things. Brain fog is getting worse at moment too , but that could be entirely coincidental.

Thanks . Daughter thinks it's random , but it's not been happening often enough to really be sure of that. Frequency seems to be changing though.

Do you feel there's any pattern to it? Is it when you've overdone it / are in a worse patch .... Or is it completely random ?