1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
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UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

Discussion in 'General ME/CFS News' started by Firestormm, Jul 10, 2013.

  1. Firestormm

    Firestormm Content Team Lead

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    I didn't even know this existed! :zippit:

    Sasha likes this.
  2. Sasha

    Sasha Fine, thank you

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    Clinic? What clinic?
  3. Sasha

    Sasha Fine, thank you

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  4. Sasha

    Sasha Fine, thank you

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    That looks a good opportunity for consciousness-raising among PWME who have just gone through the NHS diagnosis mill and may not be aware about the issues around CBT/GET etc. and among NHS professionals who may also not be aware of the issues around CBT/GET.

    A date for our diaries! :)
  5. Valentijn

    Valentijn Activity Level: 3

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    Dr. Speight looks like a very good one - explicitly opposed to the psychosomatic theories :thumbsup:

    Sue Luscombe seems to have a pretty superficial grasp of the dietary issues and supplement needs of ME patients though, but at least accepts that there are food intolerances, and that PEM is a real thing. So she might experience a bit of a learning curve in some regards, but seems to be on the right track. A document she wrote about it is at www.bda.uk.com/foodfacts/CFS-MEandDiet.pdf
    Sasha likes this.
  6. Firestormm

    Firestormm Content Team Lead

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    Valentijn likes this.
  7. justy

    justy Senior Member

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    I'm getting a whiff of an opportunity to ask some difficult and searching questions.

    I'm imagining most people with questions being fobbed off with advice to 'rest (but not too much), pace (but not too much), keep active and get enough sleep at the right times of day, make sure you keep busy, take anti depressants, yadda yadda yadda'

    sorry, most cynical.
    MeSci likes this.
  8. Firestormm

    Firestormm Content Team Lead

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    I hope not Justy. It's not the NHS answering the questions it will be Dr Shepherd et al. as I understand it. Probably have to keep the answers general - you know as we do on PR and elsewhere kinda 'Go see your own GP' 'We can't prescribe treatment' etc. but I'd hope for some better answers than if they came from someone without experience of ME.
  9. Sasha

    Sasha Fine, thank you

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    Even though we've got a 'friendly' answering the questions - Dr Shepherd, who knows his stuff - it's going to be a forum seen not just by well-informed members of the community but potentially thousands of PWME who are newly diagnosed or who might not know what's what, as well as the NHS in general, so perhaps there's something to be gained by asking about the NHS's shortcomings in this area ad asking those difficult questions. Why aren't we screened using the IACFS Primer guidelines? Why can't we have anti-virals if we're willing to take the risk? Could we have Rituximab? Why is no medical treatment available at 'specialist' ME/CFS centres? Why aren't we routinely screened for OI? Etc.
    WillowJ, justy and Valentijn like this.
  10. justy

    justy Senior Member

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    Sasha those are exactly the sort of questions i was thinking of (only i couldn't think of them)

    Nice one!
    peggy-sue and Sasha like this.
  11. WillowJ

    WillowJ Senior Member

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    Dr. Nigel Speight is the medical advisor to the 25% ME Group, so it should be much better than this.
    taniaaust1 and justy like this.
  12. Firestormm

    Firestormm Content Team Lead

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    Bump.

    Apparently you can now post questions in advance for the panel to answer.

    Here is who has signed up for the panel.

    I can't see Nigel Speight up there which is a shame. Maybe more will come on board nearer the time.

    Oh the rumours were true. Um... hypnotherapist. Oh. Ok. Well... Crap :snigger: Sorry. I know some find this sort of therapy useful, but, oh dear... hilarious personal experience... :zippit:

    Here is where you can join and leave a question. I think you probably need to read the rules/guidance beforehand.

    Can I just say in a more serious tone of voice, that I don't know if they intentionally separated ME from CFS in the questions to be asked bit. It could be an oversight. Might be worth asking...

    :)
  13. MeSci

    MeSci Activity level: 6

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    A BIT of a learning curve....?

    from 'Chronic Fatigue Syndrome/ME and Diet' that you linked to:

    That's the rubbish that has been peddled by official bodies since at least the 70s.

    More rubbish. The (beneficial) leaky gut diet commonly excludes milk as well as reducing carbs and removing gluten.

    See above.

    In the short term, perhaps, but in the long term they may produce great improvement. It's no good including a wide range of foods in your diet if they cause or perpetuate leaky gut and consequent autoimmune disease, and at the same time cause food to whizz through you so fast that few nutrients are absorbed.

    Contrary to popular belief, evidence for this is poor.
    Let's hope the other experts make up for this junk!
    taniaaust1 and Valentijn like this.
  14. Esther12

    Esther12 Senior Member

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    ?

    So no talking about 'research'?

    "We're a panel of experts, so just trust us. We cannot be expected to answer questions about evidence, or research. That would get in the way of our expert opinions."

    re the diet advice - I've seen much worse with CFS, and am sympathetic to the concern that some patients take on diets which make life more of a chore without bringing much real benefit, but she also goes beyond the evidence with their own advice. Increasingly, I think it's best to just have people play about and do what feels best for them. The quality of evidence used for a lot of diet advice is just shockingly bad imo. No wonder they don't want to talk about research.
    Valentijn likes this.
  15. August59

    August59 Daughters High School Graduation

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    I see a Dr. Neil Speight MD Intergrative doctor in Charlotte, NC and I'm wondering if there is any relation between these two as he is a very open-minded physician. I will admit that I think he was caught off guard by my amount of diagnosis and the amount of medication currently taking. He was going to start in a more typical medical doctors mentality in collecting data and as well collecting tubes of saliva and had me taking glycine and several pills a day of DMSA and a dose of potassium.

    I want to go and see him again soon and I'll have to inquire as to any relation?
    ukxmrv likes this.
  16. Firestormm

    Firestormm Content Team Lead

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    Thanks for reminding me about this. I HOPE there hasn't been trouble. The forums that were open were closed. They had been allowing questions to be posted; but then it all shut down - was locked - for a week or so and still appears to be locked now:

    Online clinic on CFS/Fibromyalgia/ME - 14-20 August 2013

    It's a clickable link (Sash ;))

    Maybe they were getting too many questions or too much debate? I don't know. Seems weird and the ME Association commented similarly last week.

    ANYWAY... so far as I know it's open for business tomorrow [sigh] :(
    Sasha likes this.
  17. Firestormm

    Firestormm Content Team Lead

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    Dr Nigel Speight (Pediatric Medical Advisor to the ME Association) will incidentally be coming to Cornwall MeSci to our 'Question Time' next month.

    I am not sure he is on this NHS clinic panel now however - although it was said he would be initially.

    Did you see THIS - he was in Northern Ireland at the weekend - went down a storm by all accounts :)
    ukxmrv likes this.
  18. MeSci

    MeSci Activity level: 6

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    Nope, and I still haven't. :( I'm not on Facebook. :)
  19. Firestormm

    Firestormm Content Team Lead

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    For you and only you:

  20. MeSci

    MeSci Activity level: 6

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    I am honoured at such a special privilege! ;)

    I hope everyone else has covered their eyes, seeing as it was just for me. :D

    Is Nigel Speight really the only doctor to have apologised for the appalling treatment that ME sufferers have received? I hope not.
    Firestormm likes this.

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