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R&K member Louise was misdiagnosed
- she found out through the R&K ME Group!

A personal message from Louise: 

"I want to say a profound thank you for featuring the message from the Christopher Lane Trust in your newsletter last year - it probably saved my life, and has certainly improved it immeasurably. I now have an accurate diagnosis and medication that works and it has given me my life back; I am more grateful than I can put into words. Thank you!"

Louise was diagnosed with ME/CFS in 2021 when she was 21. Monica, Louise’s mother, joined the R&K ME Group on Louise’s behalf in 2023 and contacted us earlier this year with extraordinary news:

"I wanted to let you know that Louise  has recently been diagnosed with adrenal insufficiency, which is fatal if left untreated. Her diagnosis is thanks to information we received in one of the Bulletins sent out by the R&K ME Group.

In 2023 a Bulletin contained an article about the work of the Christopher Lane Trust, which aims to support people who suffer from damage to the pituitary gland following a head injury to get a correct diagnosis and appropriate treatment. The damage can result in symptoms that can be mistaken for ME/CFS, and this has turned out to be the case for my daughter.

The more recent diagnosis has been because of the information we got
through the CL Trust and the R&K ME Group, so I wanted to say thank you.


We don’t know how long it might take Louise to fully recover - there was an instant improvement as soon as she started the medication, but she's a got some way to go & the effects of being ill for so long will take some time to work through.  We have to be patient!  It is a real joy to see her able to do ordinary things like walk round the park again.

There's a chance that the condition affecting Louise might have been picked up much earlier if the process to diagnose her with ME had included all the blood tests recommended by the ME Association, including the one for adrenal function which may not have been done in her case. 


I would encourage anyone who's been recently diagnosed to check they've had all the relevant tests to avoid missing things.   A positive test for ME can't come too soon!"

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