Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Doctor in / near London to oversee the Myhill supplement regime

Discussion in 'ME/CFS Doctors' started by PeeWee, Nov 6, 2016.

  1. PeeWee

    PeeWee

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    My partner is trying to move to Sarah Myhill's regime of supplements, vitamins, minerals, etc. She is very committed to trying this & is introducing or increasing one thing every two to 3 days. Unfortunately one of the supplements has unexpectedly caused serious headaches, so she's thinking of splitting the tablet, taking much less initially and working up; another supplement is not very palatable so she's mixing it with cream and rubbing it into her skin; another one she knows she has difficulties with so she's using a spray-on version. This feels a bit hit & miss & it would be awful to get something wrong by mistake & maybe not even realise.

    We'd pay for Dr Myhill to oversee all this, but she doesn't take new patients. Can anyone recommend a doctor in the London area who would oversee Sarah Myhill's programme and support our attempts to do this.
     
  2. mermaid

    mermaid Senior Member

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    @PeeWee I used to see Dr Charles Forsyth who is in Surrey and London, but I seem to remember that he had a long waiting list also. Did you know that Dr Myhill has a list of Drs/practitioners on her site who work in a similar way to her? Dr Forsyth for example also used Acumen Lab. It says on his site that he's not taking new patients for 2016, but we are nearly at the end of that.
    http://www.dr-forsyth.com/Dr_Charle...oydon,_Surrey_&_Biolab,_Central_London_2.html

    Actually I have just looked at Dr M's site and I can no longer see that list of other practitioners. Maybe you could email them to ask about it, as it was definitely there at one time. There may be others apart from Dr Forsyth. There is a also a Facebook group called Support for followers of Dr Myhill's Protocol where there are 2 admins who could point you to that list. It's also very helpful and supportive.
     
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  3. Barry53

    Barry53 Senior Member

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  4. Hip

    Hip Senior Member

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    Last edited: Jan 9, 2018
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  5. mermaid

    mermaid Senior Member

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  6. PeeWee

    PeeWee

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    Thank you to everyone who has answered. The 'roadmap' is a useful summary but maybe not that helpful for those who have no way of getting tests done or treatments prescribed?
     
  7. Hip

    Hip Senior Member

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    One of my motivations for compiling the roadmap was precisely that reason. I am also in the UK, where there is a great shortage of doctors willing to prescribe some of the helpful protocols that ME/CFS doctors elsewhere are using. So sadly as an ME/CFS patient in the UK, you cannot just go to a UK ME/CFS doctor, put yourself in their hands, and hope that they then do the rest.

    No, in the UK, either you spend time reading up on the ME/CFS protocols used, and then consider trying them under your own steam, and as your own doctor; or else you get nothing at all (except of course the less than useless CBT).

    You can get most tests done privately in the UK if you are willing to pay. In some cases, you can even try the treatment without necessarily being tested. For example, when I tried the herbal immunomodulator oxymatrine for my suspected enterovirus triggered ME/CFS, I had not had any enterovirus testing done, but I tried oxymatrine speculatively, just to see if it might help.

    Similarly, patients can consider trying ME/CFS protocols like high dose vitamin B12, the methylation protocol, low-dose naltrexone, immunomodulator supplements like oxymatrine and/or inosine, probiotics/prebiotics, a leaky gut protocol, high dose salt for POTS (if POTS is part of their ME/CFS — you can test for POTS at home), and some of the useful supplements for ME/CFS.
     
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  8. PeeWee

    PeeWee

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    Thank you Hip - just read the thread you linked - really useful (though will take 2 or 3 readings!) My partner has been building up Sarah Myhill's supplement regime for just over 2 weeks. She has 8 of 12 supplements up to Sarah Myhill's recommended levels, a couple of things still to add and a couple more at low levels yet, but she says she has had significantly more energy & felt 'much more normal' the last couple of days. Long may that continue.
     
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  9. Hip

    Hip Senior Member

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    Great to hear that.



    Would you have a link to these 12 supplements and their recommended dose levels? It is only in recent weeks that I have started reading about the mitochondrial research of Myhill et al, and I am still trying to take it all in.
     
  10. Barry53

    Barry53 Senior Member

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    Dr Myhill was mentioned twice by callers this morning into Kaye Adams' BBC Radio Scotland programme this morning.
     
  11. PeeWee

    PeeWee

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    @Hip to answer your question on Sarah Myhill's supplements:

    Elle is trying Dr Myhill's 'Daily regime of nutritional supplements' as detailed on pg 85 of her book 'its mitochondria, not hypochondria' - the 2014 edition, reprinted 2016. This maps out supplements across 3 categories - standard good health supplements for all; mitochondrial support; extra antioxidants (Elle is not taking most of these extras at present - may add later). The page details a schedule of what to take when, across 5 points in the day.

    Doing this is not cheap - but then neither is being unable to work. We're regarding this stage as an investment in Elle's health, seeing if it improves things (& the signs so far are good). Once it's established, there may be ways to cost-reduce but at present we've gone for the ones SM recommends or what seem to be the most trusted brands.

    Elle is taking (or is working up to):

    Standard good health supplements
    • SM's MMM mix 4g / day (Elle is dissolving this in aqueous cream & rubbing it onto her skin as detailed in the book / website for those people who prefer not to dissolve the daily dose in 2 pints of water & drink it).
    • 1 multivitamin tab (Biocare - SM site recommended)
    • 4 Vegepa capsules
    • Dessertspoon of hemp oil (starting this later this week)
    • 2-10 grams Vit C - whatever your stomach will tolerate (Elle is taking a 0.5g 'stomach-kind' Vit C tablet & spraying on Dr Myhill's liquid version for the rest as her stomach responds badly to Vit C.
    Mitochondrial support
    • 1-2 grams Acetyl-L-carnitine (Elle is taking 1g for the moment)
    • 12.5g D-ribose in 5 doses spread throughout the day
    • 250mg Co enzyme Q10 (Elle had difficulty with a part-dose of 100mg, so is trying again at 30mg which seems ok - she'll increase in stages.
    • 500- 1500mg Niacinamide (B3) (Elle had difficulty with a high dose & will try again working up from 100mg)
    • 1/2 ml Magnesium sulphate by injection (Elle is taking Floradix Magnesium supplement instead)
    Extras
    • B12 by tablet or spray
    • 1000 iu Vit D (there is also quite a bit of Vit D in the MMM mixture)

    Elle's been adding a new supplement or increases the dosage of something every 2-3 days, dropping anything that causes any problem & re-introducing it at a lower dose. She's at recommended level on 8 of the 12, part-dose on 2, starting another later this week & will re-introduce the last one when the low-dose tablets are delivered.

    We may not have got all this right - its what we're doing, not necessarily exactly what's recommended, but we're trying to get as close to Sarah Myhill's regime as we can.

    Elle says she has had more energy the last couple of days & if that continues all this will be worth it.

    Hope this helps. Happy to continue to report as things progress.
     
  12. Hip

    Hip Senior Member

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    Thanks very much for posting the supplement list.

    Are you also looking at taking the Krebs cycle support supplements that Dr Myhill uses? Though I understand it is only a specific subset of ME/CFS patients that are deficient in the Krebs cycle substrates: the Group A2 patients. The different patient subset groups are detailed in this post. I believe when you get the "ATP Profiles" test from Acumen Lab done, you can then work out which group you are in.

    The Krebs cycle acids are:
    alpha-ketoglutaric acid, malic acid, fumaric acid, succinic acid, citric acid, pyruvic acid and pantothenic acid. Ref: here.





    I have found that www.healthmonthly.co.uk are consistently one of the cheapest supplement suppliers in the UK and Europe.

    Another way to get even cheaper supplements is buying from online bulk powder supplement suppliers, such as www.myprotein.com or www.bulkpowders.co.uk in the UK, or purebulk.com in the US. Bulk powder can literally be 5 times cheaper that buying supplements in capsules or tablets. Once you have plastic measuring spoon sorted out (usually supplied with the supplement), it's not too difficult to take the right dose in powder.

    Another excellent option for bulk powder supplements is AliExpress, which is a kind of Chinese eBay. For example, if you buy Q10 Powder on AliExpress.com, it costs around $200 for 500 grams of Q10 98% powder. Buying bulk Q10 this way will work out around 15 times cheaper than buying Q10 capsules in a jar, gram for gram. And this Chinese Q10 powder has this nicest, cleanest taste of any Q10 powder I have tried.
     
    Last edited: Nov 8, 2016
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  13. PeeWee

    PeeWee

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    Can you get an Acumen Lab ATP profiles test done without this being requested by a doctor? We thought not - though we'll try calling to ask them. Our first question though was how can we find a doctor to support us through this!

    And can you be sure the Q10 powder from China is what they say it is?

    Elle has experienced dizziness the last couple of days following introducing CoQ10 3 days ago. Has anyone else had CoQ10 cause dizziness? Or dizziness caused by acetyl l carnitine?
     
  14. Hip

    Hip Senior Member

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    I believe you can get this test done through Dr Myhill's website; interpretation of the test result by Dr Myhill is extra. I have not taken this test myself, so don't know much about it. You could PM a forum member who has taken it and ask. Whether you want to spend the money of course is another question.



    I've bought quite a few supplements through AliExpress. The products look fine to me, and I would guess that AliExpress is as reliable as eBay in the UK, given it operates with user feedback scoring. I usually buy my stuff from G&E Nutrition on AliExpress, as they always seem to have the best prices, and have a vast range.
     
    Last edited: Nov 8, 2016
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  15. PeeWee

    PeeWee

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    The only test available through SM's website, unless you are an existing patient, is the Adrenal Stress Profile test:

    CURRENT SITUATION WITH RESPECT TO NEW PATIENTS AND ALL TEST REQUESTS
    Please note that due to Dr Myhill’s extremely heavy workload the following policies will apply as of August 2016:

    1. Dr Myhill will now carry out the Adrenal Stress Profile test for 'correspondence only' patients and non-patients within the UK - this will be carried out on a TEST FACILITY ONLY basis - you will
    receive a copy of the test result together with a brief recommendation.

    2. No new patient consultations are currently being accepted.

    3. ‘Correspondence only’ patients (i.e. those who have never spoken with her at a consultation) may only order repeat tests or a test that has been recommended in a letter from Doctor Myhill and
    have an interpretation of such – no other tests sorry except an Adrenal Stress Profile - see point 1. above.

    4. All other test requests from non-patients remain suspended.
     
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  16. Hip

    Hip Senior Member

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    So I guess Dr Myhill is completely overloaded with patients (not surprising, as she is one of the only doctors in the whole of the UK that tries to offer helpful treatment to ME/CFS patients).

    I imagine you'd probably be able to get the "ATP Profiles" test done via Acumen Labs directly. Though without instructions on how to interpret the results, it may not get you very far. This test measures 5 aspects of mitochondria function and energy metabolism.

    I tried to interpret one forum member's "ATP Profiles" results in this post, to see which ME/CFS group of he would fall in, but I was a bit unsure about some parts of the interpretation. But as mentioned, it's only in recent weeks I have started reading about the research of Myhill, Booth and McLaren-Howard.

    I am also not clear about how often this "ATP Profiles" test (and any further investigative tests that Dr Myhill orders, such as the mitochondrial translocator protein studies, or the mitochondria cardiolipin studies) actually lead to treatment strategies that result in benefits. There don't seem to have been many members of this forum who have taken these tests, so it's hard to gauge their utility. Bear in mind that these are sort of research tests, rather than a standardized medical test.
     
    Last edited: Nov 8, 2016
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  17. PeeWee

    PeeWee

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    That's a really good point @Hip - even if we can get the lab to do the ATP Profiles test we'll need to get the results interpreted. So we'll need a supportive doctor. Which is where we began this thread!

    We have found a couple of possible doctors, with whom we plan to open negotiations. We're not terribly into the ones who list CFS as a speciality and then turn out to offer hypnotherapy or counselling. This is a physical illness, for crying out loud.
     
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  18. Hip

    Hip Senior Member

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    Indeed!

    I wonder if Dr Kenny De Meirleir in Brussels does anything along these lines. It's not quite London, but quite accessible via Eurostar. KDM is one of the very few world-renowned ME/CFS doctors in Europe. Most of the good doctors are in the US.
     
  19. PeeWee

    PeeWee

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    As I remember (read about him some time ago!), De Meirleir has a focus on testing for & treating viral involvement. Sarah Myhill has a focus on mitochondria. We're looking at the moment for a doctor to support an attempt to follow the Myhill regime. We were told today, by a doctor, that Acumen, the only lab in the UK which does the ATP profiles test, is currently not accepting new ATP profile orders as it's overwhelmed with requests for them. Don't know if that's correct - it would be interesting to know.

    So, one of the only doctors in the UK prepared to go public about treating cfs is so inundated that she cannot accept new patients & the test she writes about is unavailable because the company cannot cope with the demand?
     
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  20. Alexi

    Alexi

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    There is a FB supporters of Dr Myhill Protocol page which could be useful ?
     
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