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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Advokate

    Neutropenia - 'Normal' for ME?

    Hi everyone, I've done a search of the forum but can't really see any personal experiences, so I'll ask my specific question here. Kate has recently had some bloods done (last set December) and her neutrophils are VERY low. She's had ME for approximately 26 years and been very severe for...
  2. Advokate

    Please help, I'm in a predicament

    Sorry Brenda, I misunderstood you. His advice in the interim was to follow the NHS route to get the weight issue under control. That's what we were attempting to do, via the GP. Sadly, it's come to this. Kate has her file from Breakspear - which clearly shows various sensitivities and abnormal...
  3. Advokate

    Please help, I'm in a predicament

    Fair point - there does indeed appear to be a witch hunt going on. How utterly ridiculous this whole thing is... :bang-head: (P.S. Thank you for your earlier emails - I will reply when I get home from work as I'm typing on my phone just now.)
  4. Advokate

    Please help, I'm in a predicament

    Brenda, Kate's mum and I are trying to get hold of Dr Weir. And will continue to. The GP's opinion isn't really one we want in the first place, as she's uneducated about ME and too ignorant to learn. CG - I personally quite like that this is in the 'public domain' and no names (or locations)...
  5. Advokate

    Please help, I'm in a predicament

    Sorry Nika, we were typing at the same time :)
  6. Advokate

    Please help, I'm in a predicament

    Just to add to the above... Kate's mum has contacted the surgery and is awaiting a call back. Both doctors and head of practice refused to speak to her. Doctor has refused to visit. They have said they're deciding the next steps. I don't like the sound of that, as these 'next steps' are being...
  7. Advokate

    Please help, I'm in a predicament

    I've attempted to contact Dr Chaudhuri in the past, to no avail. I'll try Dr O'Donovan. I expect their reluctance to get involved may stem from the resulting hostility towards them - I certainly got that impression when speaking to another ME doctor, recently, who was trying to help me to...
  8. Advokate

    Please help, I'm in a predicament

    I'll certainly look to find some names and pursue this. Thank you.
  9. Advokate

    Please help, I'm in a predicament

    Absolutely, totally and utterly agree with you, and have thought this to be the case for a long time. But... what do we do? Who do we talk to? Sitting back and waiting for the inevitable conclusion without intervention is not an option, as far as I'm concerned.
  10. Advokate

    Please help, I'm in a predicament

    Thanks Mary. We (Kate, her mum, Nika and I) have tried and tried to find things she doesn't react to... since July last year. However, it appears things that may not cause a reaction at first, soon begin to! At present, she cannot eat solid food at all - it just doesn't digest. Whether that's...
  11. Advokate

    Please help, I'm in a predicament

    Hi everybody. I'm Kate's other friend, mentioned in the original posts. Sorry it's taken me so long to get around to creating an account, here - I have spent a lot of time reading and have found this forum very helpful. We're not overly concerned about dehydration. Kate is drinking quite a lot...