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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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A few questions from the PhD student..

Discussion in 'Genetic Testing and SNPs' started by Mette (PhD student UK), Mar 11, 2013.

  1. brenda

    brenda Senior Member

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    Lotus

    Thanks yes its a lonely life having ME. But even if I showed my family my 23andme results they would just say that they have similar genes and dont have `yuppie flu`.

    I was taking a tiny scrap of an active b multi but had a huge increase of depression and histamine. Today I took 25mcg hydroxb12. Maybe I should try folonic acid. Am doing well on a macrobiotic diet. It nicely balances my neurotransmitters.
     
  2. Lotus97

    Lotus97 Senior Member

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    I'm sorry to hear about your family. I'm thankful my parents supported me at least a little bit when I first got sick, but it took them 15 years to really understand how sick I am. I'm not sure if they still completely understand. My doctor doesn't seem to understand. My dad has had MCS for the past 10 years and my mom has had food sensitivities for the past few decades and has gone to "alternative" doctors. Otherwise maybe they wouldn't be as understanding.
    I assume you mean 250 mcg of hydroxy? Which multi were you taking and how much is a scrap? And were you taking sublingual b12 with it? If so how much and what kind?
     
  3. ukxmrv

    ukxmrv Senior Member

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    Mette, I owe you an apology. You asked about Quack doctors and I forgot to add to the thread.

    One particular one stands out. His name is Dr Peter Nixon and he was a Cardiologist at Charing Cross Hospital in London. He also operated a private "deep sleep" clinic using his NHS patient practise to feed into this. Dr Nixon thought that ME was due to Htperventiliation and could be cured by drugging patients into a coma like condition for a week or two. That's what he wanted to do to me.

    During my appointment with at his NHS clinic he put pressure on me to go into his private clinic to be drugged even though he could not induce hyperventilation (had a huge amount of equipment testing this)

    Here's a paper which inludes the publicity he managed to get for his quack ideas

    http://www.medicalsociologyonline.org/oldsite/archives/issue41/pdwolfe.html

    <This characterisation of ME personality and lifestyle is also apparent in the theory that ME is an effect of hyperventilation, or overbreathing. In this version of the 'yuppie flu' construction, sympathy for the sufferer morphs into contempt. The theory, based on the claim that a change in breathing lowers the level of carbon dioxide in the blood, inducing malfunction in muscles and other organs, was publicised in an article on the front page of the Sunday Times (Hodgkinson, 1988); the title, predictably maddening to sufferers, was ' ‘Yuppie flu’ is all in the mind, say doctors'. The doctors concerned were cardiologists Peter Nixon and Stuart Rosen, who expounded their views in the same issue of the Sunday Times, and whose proposed method of treatment was a period of sleep induced by heavy sedation, followed by breathing retraining.>

    and how he was eventually exposed here

    http://www.duncancampbell.org/content/preying-hope
     
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  4. brenda

    brenda Senior Member

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    Lotus

    You are very fortunate to have a supportive family.

    The multi is Douglas Labs and I started with a speck and built up to one eighth. I was also taking Jarrows in the glass bottle, (an eighth of 400mcg methylfolate 500 mcg mb12) under the lip. The hyrdoxb12 is 25mcgs which I will double today and build up. I am taking p5p 25mg and 15 mg zinc both tolerated well
     
  5. golden

    golden Senior Member

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    Clear Light
    Friends turn into Enemies...

    And Enemies turn into Friends...

    There is only The Eternal Friend :)

    (saying by someone.)
     
  6. Lotus97

    Lotus97 Senior Member

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    I don't know what the hydroxy equivalent to methylcobalamin is, but if I had to guess I'd say that 500 mcg of methylcobalamin might increase methylation as much as 2000 mcg of hydroxocobalamin. I think this is partially due to the fact that hydroxocobalamin uses up SAMe to make the conversion into methylcobalamin and adenosylcobalamin. P5P will also increase methylation. The Douglas Labs b complex has Metafolin methylfolate which is more potent than other types of methylfolate. According to one source, Metafolin is equivalent to twice as generic/racemic methylfolate such as the type in Thorne's b complexes and multivitamins. Quatrefolic methylfolate is in between the two in terms of potency.
     
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  7. Lotus97

    Lotus97 Senior Member

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    I wasn't sure what you meant by high histamine or why you mentioned the zinc and P5P, but after some Googling it seems you have pyroluria (?) I had heard it mentioned a couple times in the forums, but I didn't know what it was.
     
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  8. brenda

    brenda Senior Member

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    You`re right Lotus - I have looked it up. Thanks for that! Does low zinc mean high copper? There have been aneuisms in my family which are connected to copper levels but I dont know if it is high or low.
     
  9. PennyIA

    PennyIA Senior Member

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    http://ezinearticles.com/?Copper-Deficiency-Linked-to-Aneurysm-and-Stroke-Risk&id=7603264

    Thanks for mentioning this. My mom had a couple of episodes of cerebral aneurisms - in fact, she died from complications after her second one. I was thinking that I would probably be at risk for it, but had no idea if there was anything I could watch for to see if I could do anything preventative.

    Am probably going to want to get some copper levels tested for this. Thanks!
     
  10. PennyIA

    PennyIA Senior Member

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    I wonder if anyone knows if there is any link around copper 'processing' and MTHFR. Similar to how you can take regular B12 vitamins, but not be able to break them down and use them? Ergo - you have tests that show high levels, even though you still have a deficiency as far as symptoms because the body isn't utilizing it?

    I'm pretty certain my mom (history of anuerysms) had MTHFR as well and my mini-search on google does talk about the methylation process (but only in a positive light) for how it helps get the copper to where it needs to go.
     
  11. Lotus97

    Lotus97 Senior Member

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    Copper and zinc are said to be antagonists, but I don't know if one being low necessarily means that the other is high. I've suspected copper toxicity for myself due to symptoms, but I've realized that my symptoms could be from a lot of other illnesses so I hope I can get tested at some point.
     
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  12. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi Brenda,

    I’m sorry to hear about your family. It must be tough going through this alone, but I’m glad you find support here at PR.

    It seems it’s very tricky to figure out the right dose of supplement. Does it all come down to trial and error, as I’ve seen others mention? Where do you buy the supplements? I can imagine them to be expensive... You mentioned diet – do Yasko and Fredd also include advice on diet in their protocols? Do you keep a food diary? What is a macrobiotic diet?

    Sorry for bombarding you with all these questions – would be great if you can answer some of them:)


     
  13. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi Lotus97,
    you seem to know a lot about the treatment protocol and the supplements – have you studied genetics and methylation?
    How do you sense make of all these different supplements? And how do you know which to take first? And when to add new ones?
     
  14. brenda

    brenda Senior Member

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  15. Lotus97

    Lotus97 Senior Member

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    Deciding which supplements to take is tricky business. Emphasis on the word "business" because it can get quite expensive. I do a lot of research, but it still comes down to trial and error (and a certain amount of trust). I've told myself I'd cut back on supplements once my health improves, but it's taking a lot longer than I thought so I'm going to have to do a serious evaluation within the next month or two.

    With methylation I'd start with B12 to make sure that's tolerated and then add folate later. If you're doing Rich's protocol then you could add folinic acid before methylfolate. I'd recommend starting at a low dose because some people are very sensitive.

    Rich doesn't have any dietary advice in his methylation protocol, but he does talk about that in various other threads. One thing he talks about is how a moderate/high protein diet could cause problems with ammonia, but some people here need a decent amount of protein (I know I do) so it's better to focus on ammonia removal strategies rather than cutting back too much on protein.

    I've spent a lot of time learning how to do methylation and listening to other people's experiences, but I haven't spent much time on the theory behind methylation. I need to budget my time, energy, and brainpower so that doesn't take priority since it's not necessary to know. I haven't spent much time on genomics either, but I would like to learn more about that. Maybe when I receive my SNP results I'll be more motivated, but again I have to budget my time and there are other issues that seem more important right now.

    Rich seemed to think that while there was a lot of potential in the study of genomics, it was only of limited use as far as applying the knowledge to methylation. This is from August 2012:
    (I'm not sure if this was before 23andme lowered their price to $99. Maybe he would have the same answer, but the methylation pathways panel costs $299 which is why I mention it)
     
  16. Esther12

    Esther12 Senior Member

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    I'd be curious about Mette (PhD student UK) 's views on some of the points I raised in my last post:

     
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  17. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi Esther12,

    I’m sorry for not responding to your post. This was not my intention, but for some reason, your post must have slipped through. But thank you for posting again. Must say, this is amazing stuff, and somewhat unbelievable... but then again...
    I can easily see how one could do a whole study of the many “performances” of treatments available for ME/CFS, talk about the different regimes of justifications used or not used to make an argument and how medical research is justified and taken up by medical practice, and also how support groups respond to such studies. I’d love to include parts of this in my thesis (not sure how yet) - however, because of my study having a different focus, I am a bit limited. But could def see a postdoc opportunity here.

    I understand your concern about my research, and it is def not my intention to cause disdain. But as the example with the PACE trails shows I cannot know how my research will be taken up by others and spun to fit an argument. But what I can do is to be aware of the way I write and present my findings, and that is also why I am very grateful for these exchanges.

    It might help if I explain my research focus a bit more: The work I am doing in trying to understand how you make sense of genetic data is part of a bigger study on what consumer genomics make possible, especially focusing on research and sense-making practices (I am also looking at 23andMe’s research activities in relation to its studies on Parkinson’s disease and also health studies done by citizens, e.g. Genomera - that is a group of non-scientists who conducts its own health studies using 23andMe data).
    Within the consumer genomics debate, there is a lot of discussion on ethics (discourses of self-care, responsibility and empowerment) and clinical standards and quality (e.g. are the tests clinical and analytical valid?). I’m less interested in these debates (although they are important), because here genetic data and genetic testing tend to serve the purpose of social value, e.g. good health, or evaluation. In my work, I’m not thinking about the worth of genetic data in the sense that genetic data has value in itself, but what genetic testing and genetic data make possible, thinking here about value as "distributed" and as a process (valuation). It’s about studying the processes in practice made possible with consumer genomics. That’s why I’m interested in the practicalities of how you make sense of the genetic data. I also think it’s important to understand the context of the sense-making practice, and that’s why I ask these questions about ME/CFS and how it’s like living with ME/CFS. I’m not interested in a general view of how people make sense of genetic data, but in the nuances and complexities.
    I chose to focus on ME/CFS because I find what you’re doing fascinating, and because of personal interest (my mother lives with fibromyalgia – still not sure how and if fibro differs from ME?). Anyway, overall, in my project, I am interested in how consumer genomics challenges, adds to and/or changes the way research and sense-making is carried out and how people live with science and technology.

    I hope to continue to have these exchanges with you as I find them very rewarding – thank you again for all your comments. And as I go on, I hope to start new threads on other findings and questions.

    Also, if you have any questions, just ask, and I’ll do my best to answer them.

    Btw, I’m soon going to order a testing kit myself, and if my results in any way could be helpful to you, I am happy to share them with you.

    All the best,
    Mette:)
     
  18. Esther12

    Esther12 Senior Member

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    Thanks Mette.

    I don't think that I really understood this part:

    I'm a bit worried that your approach is something like: "This genetic data may not have real scientific value for patients, but it helps provide a framework that allows others to make sense of their lives, increases a sense of control, etc, etc" A bit like some of the justifications which can be used for faith. My worry is that I have seen how this sort of approach towards research has previously gone on to cause real problems for patients and how they are treated. Given the current state of society, I think that assessing the cognitions of minority groups in a pragmatic manner is quite a dangerous thing to do, even if you are trying hard to help those with CFS. I did not mean to imply that you would intend for your work to lead to patients being ill-treated... but given the problems which surround CFS and how it is treated, good intentions are often not enough.

    Everything I posted is easily verified, and I'd encourage you to do so. These things are really important, particularly if you are interested in the attitudes of CFS patients, ideas about what 'recovery' and 'back to normal' means, and so on.

    The PACE trial's protocol: http://www.biomedcentral.com/1471-2377/7/6

    The PACE paper on recovery: http://www.meassociation.org.uk/wp-content/uploads/2013/01/White_PSM_Paper_Jan13.pdf

    The SF36 paper they cite for their claims (they use the physical functioning data laid out in table 3, distrubution for the entire population, not just working age, is in figure 1): http://www.ncbi.nlm.nih.gov/pubmed/10528952

    I've not provided links to the initial PACE paper (which wrongly claimed that an SF-36 PF score of 60 was the mean - 1 sd for the working age population), or the initial coverage (actually, I'll chuck in this paper which claims PACE showed a 30-40% recovery rate for CBT/GET: http://www.biomedcentral.com/1472-6963/11/217 ).

    Be sure to check the claims in the PACE papers too. For example, in their recovery paper, they justify changing their criteria for 'recovery' from requiring a score of 85 (as was laid out in their protocol) to a score of just 60 (lower than the score required as part of their entry criteria) by claiming:

    When you check the data cited, this is clearly false.

    If there was any other claim I made which you would like a citation for, I could easily dig one up.
    If you are interested in the way in which words and concepts are used and manipulated with CFS, looking at the way the results from PACE were spun would probably be an important area to try to understand.

    Currently, those involved with PACE are trying to present critics of their work as being motivated by a hostility to psychiatry, rather than apologising for their mistakes, and acknowledging that the treatments they built their careers upon are not nearly as effective as they had claimed. Studying them, and their cognitive and emotional responses might be less likely to go wrong - those with social power and influence are less likely to be unduly harmed by pragmatic research into the narratives they construct around themselves!

    I realise that I'm encouraging you to do more work... but I really think that having a grounding in this sort of stuff is important for understanding the ways in which different CFS patients go on to try to make sense of their illness.

    edit: I've just realised that a lot of this is covered in the discussion of the FOI request for the results on recovery as it was laid out in the trials protocol (which the PACE researchers are fighting):

    https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

    As you may be aware, there is considerable concern about trials that do not release data in the manner laid out in their protocol, as it allows data to be spun. I think that the MRC now requires all trials it funds to publish a protocol, and release data in this manner.

    PS: I'm sorry to hear about your mother's health problems. I know that other people here have problems with pain, and thinking about this made me more aware of how much more difficult life is when I'm just having to deal with little pains from burns or other injuries. Dealing with chronic and disabling pain sounds incredibly difficult.
     
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