My dear community, Never underestimate the power of a shared word. Never underestimate the power and utility of a single sentence. Never underestimate the power of the time taken to express good will. Because someone took the time to read, emotionally process and respond to a simple thread, because of them, my daughter has received a true, unbiased, competent diagnoses, officially for ME. And now we can get the very needed help. We have reached the summit after a grueling, uphill, sorrow-filled journey of desperation, anger and hope. @JemPD you said "This just makes me so bl**dy angry on your behalf. I know some doctors are great, but really, so many of them just behave like complete arseholes Its a disgraceful state of affairs Dont know if you've heard of him but Dr Nigel Speight is a fantastic Dr for children with ME. Anyone here know if he's still practicisng? Dont feel you need to reply @Aldebaran's Star , save your energy. I cant do much to help but am standing with you against these ruddy dimwits!" And stand with us you did. I was able to get in contact with Dr. Nigel Speight, at my request our GP sent him a consultation request. After the consultation, he unequivocally determined that my daughter has 'classic' case of ME. Now he will be able to advise our GP on the way forward. So, thank you, ever thank you. Can someone give this person an award?!
That's very good news. Getting a clear diagnosis and good advice for your GP is gold dust. I hope you get good support from the GP.
@Trish , yes, thank you. I hope so too. it’s quite a relief, The adolescent doc was going in a weird direction ‘metabolic syndrome’, used words like ‘deconditioned’ and ‘rehabilitation’. Even though she says she has ‘special interest’ in ME, she clearly has a different agenda
Yes, I think it's wise to be wary of any doctor that claims to "know all about ME/CFS." Obviously there are genuine exceptions but they'll usually be distinguished by the amount of times they say "we don't know." My personal exposure to this was being required to see an occ health physician. I saw two: the second was much better, not least because they were happy to review me remotely. The first one insisted on in-person, which at that stage of things was both unduly difficult at the time and PEM-provoking / harmful. Despite knowing "all about" asked me to show evidence of POTS and when I slowly stood up my HR rose from 80 to 130 they responded with "how are you doing that?"
