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Dr Sarah Myhill interview

Discussion in 'General ME/CFS News' started by justy, Jul 20, 2012.

  1. justy

    justy Senior Member

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    An interview with Dr Myhill being aired on sky uk 191 at 7pm tonight.

    Its also available to watch here:

    http://www.paradigmshift.tv/pstv/view/episode/84#

    I haven't watched it yet - will post more on my thoughts of the interview when i have.
    All the best, Justy.x
     
    Emootje, Enid and merylg like this.
  2. PhoenixDown

    PhoenixDown Senior Member

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    So how do we watch it, I don't get sky.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I was able to watch it by clicking on the link. It seems like a synopsis of her general approach to diagnosis and treatment--I didn't see anything "new," but still interesting.

    Sushi
     
    justy likes this.
  4. richvank

    richvank Senior Member

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    Hi, Sushi.

    Me, too. It was nice to see that she mentioned glutathione, B12, and methylation, even though she may not put them together in the way I do.

    Best regards,

    Rich
     
  5. PhoenixDown

    PhoenixDown Senior Member

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    Found it, sneaky text-based link under the picture of the video (I'm kinda use to a play button on the video applet).
     
  6. PhoenixDown

    PhoenixDown Senior Member

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    Ok I've watched it, it's not a bad video but doesn't go into precise courses of treatment. It's also not really an interview since it's just her talking all the way through it.
     
  7. cfidsurfer

    cfidsurfer

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    I'm glad I watched it but I was not magorly impressed. It didn't seem like she had much concrete evedence about ME. It sounded a lot more about chronic fatigue (cf) and various other fatigue related conditions. Its possible to try some of her suggestions and if they help, hey thats good.
     
  8. justy

    justy Senior Member

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    Yes, as she says, she treats the symptom of 'chronic fatigue' - i dont think she believes in the entitiy 'M.E' as an actual disease in its own right. But i think this is because she approaches medicine holistically, and from a nutritional approach. For example if someone had cancer she would look to see what had affected the body to cause the cancer and try to address the underlying issues (toxins diet etc) thats just my simplistic view of it.

    So i think many people who consult her get better because they find the underlying issue and it was something like some kind of toxicity which they manage to rid themselves of. For many others its more a case of improvement from the diet, pacing etc, but no real cure if you dont find or cant afford the testing for the underlying issue.

    I have consulted with her and she does have an amazing ability to talk with little prompting! But she is a lovely woman - very warm and kind. This talk is a very good synopsis of her views.
    Justy x
     
    merylg likes this.
  9. redrachel76

    redrachel76 Senior Member

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    I got much worse on her treatment. When I phoned her telling her that I worsening she just said "You should be getting better by now" and that was it. She also changed her protocol which used to have an elimination diet called the "pear and lamb diet" which she said people got "stuck" to a only slightly less severe diet to the current Paleolitic diet that she now uses. I saw her while she was still doing the severe diet just before the change to Paleolitic diet. It was a very severe unbalanced elimination diet that made me lose a lot of weight. I never recovered to where I was before. On top of that her EPD injections seemed to harm me.
    I've actually tried complainng about her to the GMC but too much time had passed so they were unable to take my complaint.
    She's got a giant queue of desperate patients waiting to see her and this video is just an advertisement. To be honest it just upsets me to see it.
    My bad luck was that I was very young when I saw her and was heavily pushed by my parents into it . We were all taken back by her spiel. There was no internet then either to check up on things.
     
  10. Ian

    Ian Senior Member

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    At least she tries. Most doctors just follow the NICE guidelines, which says treat the problem as a mental disorder.
     
    Min likes this.
  11. redrachel76

    redrachel76 Senior Member

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    You could go to a doctor that "tries" arsenic as a treatment instead of the disgusting NICE guide. They'll still be "trying".

    I suggest if anyone is interested in anything she advocates to be very careful. The ideal would not to go to see her and to just try a few supplements or much more gentle dietry changes alone with a local doctor in a more careful way. Her combo treatment is really quite aggressive and I still have no idea if the EPD injections she gave me were made up wrong.

    Does she still advocate Reiki and "energy" treatments?
    Also the cell magnesium test she uses is unreliable. I heard of people taking magnesium injections and huge magnesium supplements and still having no change in the cell magnesium tests. Really the conventional magnesium blood tests are more reliable.

    There's this doctor popular on a another forum I'm on who does weird operations on fibromyalgia patients. The fawning adoration for the man drives me up the wall...at least people here are more level headed about Myhill.
    His website is:
    http://www.fms-bauer.com/gb/
    So you can see the sheer weirdness.
     
    barbc56 likes this.
  12. Enid

    Enid Senior Member

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    Appreciate Rich's input - certainly part of it all - not yet a cause though.
     
  13. Ian

    Ian Senior Member

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    The NICE guidelines are utterly worthless. Don't take my word for it. Read the actual figures.

    [​IMG]
    GET comes out as THE most damaging therapy to those with CFS. Yet it is one of the main tools used for those with CFS. What a spectacular failure. They would simply be better off doing nothing.

    DrMyhill might not have all the answers, clearly its obvious she doesn't. But it doesn't take much research to realise her approach to helping patients is far better than that of the standard allopathic model. If her diets don't work for you, guess what, you can stop them and continue eating your usual garbage.

     
    Min likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    I can't find this. But if it's just a recap of her info, I'm good.

    Fwiw, no medical professional has a crystal ball and can tell what's going to work for each of their
    patients. Just look at how different we pwcs are. And imho, we'd be missing out on a lot of important info if we looked at them this way.

    It's a medical professionals overall strategy that I consider important. Imho, because functional
    or integrative doctor look for and treat root causes, like nutritional deficiencies, parasites, etc
    at least we have something concrete to test for and treat. And we're not wasting out time with cbt
    or bandaids on top of bandaids.

    I see an integrative doctor and although I've made a lot of progress, I'm not cured. But it's really hard for a totally disabled pwc
    to keep up with treatments. My funds are limitted too so I had to skip some supplements. And then there's
    my permanent damage like celiac disease.

    Fwiw, if treatment A doesn't work for YOU, move on to treatment B. Then C, D, E ... On down the line.
    We're the only ones who know how our bodies feel from "x".

    Getting the toxins out of our bodies
    thus allowing them to heal however it's going to is a good place to start and will help us determine what we need to do next.

    For example, there are people, pwcs too, who have gone gf and felt better, but for others that isn't enough. There are those
    who only needed a supplement or two. Heavy metals, etc etc.. You get the idea ...

    I can't thank dr myhill enough for putting her info on the web.

    TC .. X
     
  15. redrachel76

    redrachel76 Senior Member

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    I 100% agree with you on the NICE guidelines.
    Thank you for the statistics. I keep toying with the idea of making my own website when I feel well enough and those statistics you give will be great to put in it.

    The thing with Dr Myhill, it wasn't just that "her diets didn't work" for me.
    It was that the diets along with the the rest of her protocol made me lose a ton of weight, got me into malnutrition. Then when I tried to eat again I had horrendous pain that wasn't wasn't there before. At the same time as the diet I was given EPD injections, painful magnesium and B12 injections and supplements to make up for the stuff that was missing in the diet.

    The diet she put me on was:
    no cereal of any kind - including quinoa or rice or alternatives,
    no sugars of any kind including natural things like honey or unrefined brown sugar
    no nightshade vegetables,
    no yeasts,
    no dairy of any kind,
    no poulty.
    no soya products

    There were a number of chemicals in the supplements she used which I reacted to, She used a lot of "biolab" supplements.

    When I was getting worse she just said the 6 weeks on the diet isn't up yet and then when the 6 weeks had past she just said "you should be getting better now" and that was it.

    I have never fully recovered digestive function to what it was before her protocol.
    While I was there she told me that she used to put people on the "pear and lamb diet" which was even more extreme.
    You are correct about GET and other "official" treatments being utterly worthless... beyond terrible in my view. But still that doesn't take away the fact that I suffered greatly on her then 1995 treatment.
    I've heard she does the Paleo diet now which is a bit easier than what she was doing in 1995 when I saw her. Yet it still seems a bit too extreme to me. For example does she weigh the patients and make sure they take bloodtests during the treatment so that they don't lose too much weight?
    While I believe that some M.E patients might be lactose or frucose intolerant, putting everyone on an extreme Paleo...or even more the more extreme diet like what I was on isn't a good idea.

    You are right that I should have stopped her diet and treatment straight away as soon as I was feeling bad. But I was 19 years old at the time. I was pushed and encouraged by her and my parents to do the whole thing. Also the mainstream treatments of damaging exercise and lack of sympathy and knowlege from normal doctors at the time made her crazy treatment look great. There was no internet at the time and I was pretty naieve.

    My complaint to the GMC didn't go through BTW. b/c too much time had passed before I was well enough to complain.

    I still maintain that what she did to me was too extreme and damaged my health and that anyone who choses to visit her should be careful.

    Rich's methylation treatment is a million times more gentle and harmless than what she gave me or is still doing.
    I must rant here that I bitterly resent being the guinea pig for her formulation of current protocol.
     
  16. wallace

    wallace

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    I agree with Ian!!!
     
  17. xchocoholic

    xchocoholic Senior Member

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    Hi rachel,

    I just wanted to apologize if I sounded like a grouch and add that I really do understand your feelings towards dr myhill. I've seen several
    doctors who I felt could've done a better job. But I've also learned in the last few years just how
    complicated me/cfs really is so I'm trying to cut them some slack.

    I don't know that anyone back in the 90's knew what to do with pwcs. I'm glad dr myhill continued
    to work with us to develop all the info she has.

    I'm curios now .. Has she created a plan for those pwcs who don't respond to her "standard"
    treatments ? I think I've tried most of what she recommends and have improved but still have oi and pem. I understand
    that I have some irreversible damage (gluten ataxia, celiac, hashimoto's) but do all pwcs who don't respond have permanent damage ? Is
    this what holds them back ?
    And does the damage I have always equal disability or just in pwcs ?

    Tc .. X
     
  18. redrachel76

    redrachel76 Senior Member

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    Thank you xchocoholic.

    I suppose I am a bit "grouchy" too, from an emotional point of view. If you have a very bad experience with a doctor that has left permenent worsening and then you see them for years on forums or TV or advertisements portrayed in a completely positive light, it can upset you. From time to time I do need to rant about it and tell people about my experience. It might even help them to know.

    I don't always rant like this. I have been reading messages about Dr Myhill on this forum and others for years but I was feeling pretty bad that day.

    I answer to your question - I have no idea if she has created a plan for those pwcs who don't respond to her treatment.

    I kept away from her since then. I was in email contact with 2 people who also had bad reactions to the protocol, - though not as bad as mine and they also did not go back.

    The queue to see Dr Myhill back in 1995 was huge and that was before the internet. The only way you could hear of her was word of mouth or from M.E patient groups. I've heard that the waiting list has grown longer since then so I imagine she has no reason (or time?) to create a plan for non responders when there is a giant queue of new patients waiting.

    Sorry to anyone if I sounded rude.
     
  19. Holmsey

    Holmsey Senior Member

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    Hi Rachel, Sorry to hear that your experience with Dr. Myhill didn't turn out well, I'm even more sorry to hear that you'd have liked to involve the GMC. Reading many of the things you say I find it hard to reconcile these with my own experiences or dealings, it's almost like reading about a different Dr. Myhill!

    As many here will know Dr. Myhill is a regular target for ME/CFS sceptics, note I say ME/CFS sceptics as it apperas she is attacked for beleiving in our illness as much as for the advice and support she openly offers. Most recently it was the 'Bad Science' website but in truth I suspect the GMC are happy to hear from anyone willing to give them a reson to attack Dr. Myhill or any other Dr. who holds a view of our illness not aligned to NICE.

    During that investigation I was one of hundreds (think it topped 1000 in the end) of patients who sent letters of support recounting their own success using her services to the GMC, and what it would mean for our health to loose them.

    Since setting up her practice she has been subject to regular and lenghty GMC investigations none of which have resulted in displinary actions. What was effected during those investigations though was her ability to support those patients who have had significant success with her protocols, during the last compaint which was ultimatly held to be vexatious she was banned from prescription causing hardship and stress for many.

    Your experience is as valid as anyone else's though and so I won't pursure that but instead offer some balance by way of my own.

    Regarding diet, yep it's pretty severe if you've been used to eating anything you like. I was told that most likely my persistant sinus infection was due to dairy alergy and I should drop dairy. This was advice, I loved dairy it made up a large part of my diet from straight milk and cheese to cream sauces but I asked for and paid for the advice so I gave it a try. If it had done nothing I'd have gone back to dairy but within weeks my constant sinus pain eased. Prior to dropping dairy I was on antibiotics at least one every three months for sinus infection, since stopping it I've had one minor episode not requiring antibiotics in over 30 months.

    I also suffered greatly with IBS and reflux and while neither is 'fixed' the symptoms have been greatly reduced by her general dietary advice (stoneage diet as she calls it).

    I also got worse to begin with, a lot worse, and yes, I lost weight but that didn't surprise me as I had cut out so much that's deemed bad for everyone not just us, at times I felt I was forcing myself to eat and choking every mouthfull back. This went on for months not just weeks, but from my standpoint life was already so bad anything was worth pursuing.

    If I recall correctly Dr. Myhill expects improvement from around three months and I had a follow up phone consult at four where I recanted that I was still no better, probably worse and had new problems. It was suggested that this was part of the process and that while she'd have hoped I would have been seeing improvement by now she still encouraged me to stick with it for at least nine months before giving up.

    I did this and I'm very glad I did, as already mentioned in another thread I feel now I've fell back from a high point and am stuck there but it's still a very much better place than where I started.

    As mentioned earlier Dr. Myhill doesn't have a crystal ball, she has some ideas which are supported in part or whole by the 'science' around our illness and from their it's about listening to what patients say work or doesn't work and then shaping her own jigsaw peices before finding a place to fit them in (IMO).

    Regarding injections, again these are optional, personally I didn't have any pain with the daily B12 injections but can't comment on the Magnesium. The B12 needles was so fine I hardly knew they had gone in but still I was offered alternatives with only the suggestion (again science based) that injections were the best delivery / absorbtion.

    Regarding supplements and chemicals reacted to. I was asked to give details of all know alergies at the outset, I was also told that I would probably not tolerate many of the supplements which were good for me, in such instances advice was ALWAYS offered on how to build up tolerance or on alternatives.

    My experience with Dr. Myhill's supply of supplements is that it's not compulsory to purchase from her, you're given a protocol but there's no pressure to buy from the practice those supplements listed. Regarding quality, I've had no problems with those she does supply and can't find the same brands cheaper anywhere else (including Veg EPA offered through a not for profit ME/CFS co-operative purchase sheme I joined).

    Tests haven't been mentioned but Dr. Myhill (IMO) rightly insists on testing prior to certain recommendations such as B12 and Magnesium. Beyond this my experience is that the NHS will test for nothing following a diagnosis of ME/CFS, that even supportive GP's won't test once you have this diagnosis, but not only does Dr. Myhill offer access to appropriate testing she is in colaboration with others attempting to move forward the scinece (see alternate threads) relating to our illness.

    Finally, and while not having required such Dr. Myhill will I understand support and assist her patients in dealings with employers, insurance companies and the like.

    All in all I would offer that she is a very good ally to have and far from uncaring.
     
    Min likes this.
  20. redrachel76

    redrachel76 Senior Member

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    Hello Holmsey,
    After reading through your positive experience I see that you were on the "Stoneage diet" which was different to what I was put on. I was put on something more severe.

    I get the impression that you took different supplements and she knew to tell you that you might react to some of her supplements. She did not do that with me.
    You also did not do the EPD injections and magnesium injections that I took.

    Perhaps we each got different treatments from her and maybe that is why we reacted so differently.
    Thanks for being understanding.
     

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