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Please help, I'm in a predicament

Discussion in 'General ME/CFS Discussion' started by KateUK, Dec 27, 2013.

  1. brenda

    brenda Senior Member

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    Hi Advokate

    I don't know whether Kate has thought about rice protein powders like this one:

    http://growingnaturals.com/products/rice-proteins/

    No need to answer whether yes or no. Will try to make a few more suggestions as I think of them. The GP can give a meal replacement drink as well.
  2. brenda

    brenda Senior Member

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    Another idea - soak brown rice overnight and cook for an hour. Put into a muslin bag and squeeze some through. Dilute with the rice water.
  3. anciendaze

    anciendaze Senior Member

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    I think this is a case where you need to get an MD who believes there is such an organic disease to give you pointers about how to circumvent the NHS barricades to effective treatment. Perhaps those who investigated the death of Sophia Mirza or testified at the inquest would be able to help with this aspect even if they cannot take direct medical control. In that case they found (at autopsy) damage to the dorsal root ganglia probably caused by invading CD 8+ T cells. This is not evidence of a psychological problem. It is part of a serious public relations problem that might motivate doctors who would otherwise ignore you.

    I had wondered how that patient became so averse to medical intervention that she even refused good medical advice. I'm beginning to get the picture.
    taniaaust1, KateUK, Min and 1 other person like this.
  4. Advokate

    Advokate

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    I'll certainly look to find some names and pursue this. Thank you.
    taniaaust1 and Min like this.
  5. Countrygirl

    Countrygirl Senior Member

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    http://www.sophiaandme.org.uk/sophia & m.e. her story.html

    This article on Sophia written by her mother names Dr Chaudhuri of Romford and Dr O'Donovan of Cambrudge as being involved in Sophia's autopsy. I know Dr Chaudhuri has been involved in helping patients who have fallen foul of the NHS in the past. Perhaps he would be prepared to visit Katie and write to her GP.

    C.G.
    Last edited: Apr 5, 2014
    taniaaust1, justy and Valentijn like this.
  6. Advokate

    Advokate

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    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 get a response from Dr Weir. Sadly, no joy there, either.
    taniaaust1 and natasa778 like this.
  7. maryb

    maryb iherb code TAK122

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    @Advokate
    yes its a big problem - doctors still in practice won't rock the NHS/BMA boat to a large degree. We all know about the witch-hunts that other UK doctors have endured.
  8. Nika

    Nika

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    @anciendaze

    Just need to clear up something I misunderstood - Dr. G won't be offering Kate Immunotherapy. Dr. G is basically a doctor of environmental illnesses with... while not specific specialty in ME, some knowledge about it. He will do tests and prescribe drugs mainstream medicine won't (eg: immunovir, which is an immunomodulator and where I got confused), antivirals and possibly nutritional injections. He just has a lot of experience of peculiar diseases, an open mind and a willingness to perform tests and prescribe where others won't. We'd quite like his input on the toxoplasmosis problem. If he takes Katie on, he will probably say she needs to go to Breakspear for immunotherapy but we're nowhere near being able to yet.
    Last edited: Apr 8, 2014
    Min and justy like this.
  9. Nika

    Nika

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    I posted that on Friday.

    That too.

    It is now Tuesday. The head of the practice didn't in fact come yesterday and was supposed to be coming today... but she didn't. Instead, we have just received a phone call from the previous doctor. She wanted to talk to Katie, so I handed over the phone. Over the next minute, I could hear her tone getting more and more defeated until she handed the phone to me and told me she couldn't deal with it. So I spoke to the GP for a moment... she said there have been meetings taking place and that they would like to send a psych team round to determine whether Katie qualifies for a private room in hospital.

    I gave her Kate's mum's number and told her to call there. This is a delicate situation, I don't want to risk saying the wrong thing. That being said, its frightening... what is the solution here? Something is telling me that letting a psychiatrist visit her right now is a VERY bad idea. She's not mentally unstable in the slightest, but after so much suffering so constantly, and unable to speak much for the past few days... who knows what they'll look at her and determine?

    This isn't my decision to make. I am struggling to keep up with the situation. Katie told me not to open the door if anyone knocks, she is scared they'll send a psych team round from now without warning. She knows she's being paranoid, but I understand her fear. This is a nightmare. :(

    Katie's mum called the practice and spoke to the receptionist, asking to speak to certain GPs. They can't. She wasn't told why. She asked to speak to the practice manager. She's busy. The message was repeated: No visit today. She mentioned PALs. Someone will call her back.

    Now she's let Katie know that a new GP (but really, Katie's old GP) is coming tomorrow.
    Last edited: Apr 8, 2014
    taniaaust1, Countrygirl and peggy-sue like this.
  10. Advokate

    Advokate

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    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 considered without Kate's input, or indeed the input of her friends/carers, or her family.

    I've contacted Dr Speight (what a nice man, wish he was able to see adults) who is trying to get Dr Weir to respond to me.

    History is repeating itself, here. Any advice on how to prevent them from pushing this via the psych route would be appreciated. Kate is very ill - she need care, tests and a knowledgable doctor, not a bunch of ME-clueless shrinks.
    taniaaust1, Countrygirl and peggy-sue like this.
  11. Advokate

    Advokate

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    Sorry Nika, we were typing at the same time :)
  12. Countrygirl

    Countrygirl Senior Member

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    Just a suggestion.......................but would it not be better if this thread was now taken to the members' only section?

    I recall the problems we had with another patient's doctors who followed the posting.
  13. brenda

    brenda Senior Member

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    The only thing I can suggest is that a patient has the right for a second opinion and Kate is waiting for an appointment with a private doctor to achieve this which could be conveyed to the surgery? Sorry this is an area where expert opinion is needed. Is the BS doctor due out this week?
  14. Advokate

    Advokate

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    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) have been mentioned, other than those who have been helpful. However, if you think problems are likely to arise as a result... I'd agree we don't need any further issues at the moment!
    Last edited: Apr 8, 2014
  15. Countrygirl

    Countrygirl Senior Member

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    Advokate, names are being mentioned, especially those of certain doctors who have suffered for supporting us in the past. We need to protect them as well as the patients.

    C.G.
  16. Advokate

    Advokate

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    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.)
  17. brenda

    brenda Senior Member

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    Advokate

    I meant the doctor from Breakspear for a second opinion on whether there are psychiatric problems.
  18. Advokate

    Advokate

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    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 viral titres. I'm unsure what more he could do to convince these doctors that's she's dealing with a real, physical problem.

    Kate's also had a private psych consult in the past (which concluded she's not crazy - surprise surprise). I have to wonder exactly how biased this latest suggested psych assessment would be.
    taniaaust1 likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Nita, Kate got in contact me me recently asking for help/ideas as I was in a similar state as she's in in the past (I didnt thou have the food issues to anywhere the degree she has thou so I consider her situation a lot worst there thou the rest of her symptoms are very much to the degree mine were). Hopefully Ive given some suggestions re MCS issues (I figure you are the one she reacted to shampoo wise the other day) but are thinking hard what further can be done.

    Yes it would be ludicous her going to hospital around the chemicals, noise, light and everything else in her current state. Im truely fearing for her life thou right now, she does need hospital but obviously she needs it safely and it done appropriately without the psych stuff put on her with ignoral of her ME or it would even be worst then if she doesnt go at all.

    She's lucky to have such a good friend to try to help.

    So Ive just come back to this thread to see if Ive missed anything which I could comment on which could help.. anyway the following made me think of something.

    Im wondering if that reaction could be autonomic system dysfunction stuff. I was thinking how yuck I can feel at times when my blood volume is too low due to my POTS. When we eat of cause a lot of the autonomic system comes into this, our autonomic system controls the automatic contractions in our body, in the digestive system etc.

    When we stimulate our digestive system more blood goes to it and takes it away from other places in our body (I dont know but what having a drink of water also stimulate the body in this way too?). I are wondering how much low blood volume may be playing into things in her case, maybe her eatting/drinking issue is being caused by too low blood volume???

    Im wondering what would happen if she was able to be better hydrated to boost her blood volume by meds. (Im going to pm her suggesting maybe to try this if she hasnt done so already).

    Anyway..thanks for supporting your friend. You are doing a job which isnt easy there.
    Last edited: Apr 13, 2014
    peggy-sue likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    What Ive found in the past is that the doctors who dont know you, do so little just cause you have a ME/CFS diagnoses, that they dont even check you to see if you are dehydrated and just try sending you right back home.

    Im sure that has been missed many times in myself. I was fortunate just to get lucky with the last time I was ambulanced to hospital, if my resting heart rate wasnt noted being 150 bpm and my pulse up to 180. Im sure they wouldnt even have done the blood tests which showed my kidneys were struggling. I probably would of just be kicked out like normal (which has happened even when I couldnt walk out.. they just wheelchair me out and call a taxi then).

    Sadly I can imagine a hospital sending a ME patient close to death home, due to the view out there that ME/CFS isnt a serious disease and in UK tests are often discouraged in ME/CFS patients (and when doctors do tests, I find they nearly always do the wrong ones). Doctors who just glance at a ME/CFS person and do nothing else are likely to miss even dehydration.
    Last edited: Apr 12, 2014

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