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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Navigating The Site for Relevant Info

Discussion in 'General ME/CFS Discussion' started by MargUK, Jun 15, 2017.

  1. MargUK

    MargUK

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    Is there a particular way of working your way through this site when you're not sure where to start to investigate possible causes/treatment/research/therapies? I find I'm completely overwhelmed and keep reading things I've never heard of before - sometimes just working out what initials stand for takes a huge amount of energy but I totally understand why people use them!

    Just recently I came across adrenal fatigue by chance which appeared to fit a lot of my symptoms and scared the living crap out of me but I keep thinking there could be lots of other stuff out there but I don't have the energy to go through it all and I find I just sit and stare at the screen and think I don't know where to start.

    If anyone can point me in the right direction as to where to begin after you've done an introductory post and spent a few weeks looking around the forums, I'd be really grateful. The point I'm at is having become really ill 2 years ago but realising this was several years in the making before that, being diagnosed with CFS in October 2016, had some basic tests done and just been told nothing has shown up. I was making a very slow recovery but in February this year had a relapse. Was recovering slowly again but about 5/6 weeks ago something got much worse and I was plagued with very distressing anxiety symptoms. That seems to have died down a bit in the last couple of weeks but I have no idea why. Or what set it off in the first place.

    I have a referral in to a local place which does something called Anthroservices Therapy - I'm not entirely sure what this consists of but it seems to be a holistic approach to the whole thing which I will certainly welcome. At this point I'll try anything.

    I just feel I need to gen up on a whole bunch of stuff but don't know where to start - or how not to feel so overwhelmed with it all!
     
    Jennifer J likes this.
  2. AdamS

    AdamS Senior Member

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    Use the search function - The little magnifying glass icon in the top right corner.

    Do you know what caused your relapse in Feb? Do you crash after exertion and suffer from PEM (post exertional malaise)?
     
  3. Learner1

    Learner1 Professional Patient

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    There is a lot here... I find that as I'm interested in topics, I can search for them and read through threads with meaty discussions.

    If I had to categorize how to think of the knowledge here, is divide it into:
    • what is ME/CFS - discussion of criteria, etc.
    • research
    • immune system and infections
    • supplementation - particularly for methylation, immunomodulation, and mitochondrial support
    • interventions - drugs, exercise, CBT, IVs, immune system treatments, detoxification
    • politics - governments, insurance, getting the word out
    • social, life in general
    • surviving - getting help, disability, paying for treatment, workplace issues
    I'm probably missing some, but you get the idea. Also, remember that we are a heterogeneous bunch, with different experiences, backgrounds, causes, and comorbidities. I don't agree with everything I read, but find it worthwhile to follow the conversations and see where they lead to see if the info will help me. I find I see something I'm unfamiliar with and miss the significance, but I'll learn something else and suddenly have to go back and read the now valuable information.

    And, if someone says something that resonates, I'll start a conversation and ask a clarifying question, and have been happily surprised by the warmth and generosity of those here.
     
    Basilico likes this.
  4. MargUK

    MargUK

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    I don't know what to search for though @AdamS - that's the problem! All this stuff is so new to me and for instance I came across adrenal fatigue totally by chance so there could be a whole host of other stuff in here which might be relevant but I won't know about.
     
  5. MargUK

    MargUK

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    Thank you @Learner1 that was really helpful. That's what I needed - some sort of signposted guide as to where to start and roughly what order to read stuff in. I've just been reading posts which have affected me and my own situation so far but in passing have realised there's a wealth of other stuff out there which I don't even know about and given that it literally took about a week just to read one very long thread on anxiety, I couldn't see how I was ever going to get through it all that way!
     
    Learner1 likes this.
  6. AdamS

    AdamS Senior Member

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    Got you. Okay, if you have ME/CFS that fits this criteria and suffer from PEM, try your best to avoid overexertion and relapses.

    If you suspect that you could have something different, you could check out the alternative diagnosis section here as a starting point.

    Other than that, just browse what interests you I guess, everyone uses the forum in a different way, there is no right or wrong way to navigate it. You may want to use the search function to explore topics about 'anxiety' or 'adrenal fatigue' further for example.
     
  7. MargUK

    MargUK

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    Sorry @AdamS I just realised I didn't answer your questions! I do crash after exertion and suffer from PEM but am having a hard time knowing where my baseline is at the moment. My relapse I think came from trying to a part-time (one day a week) postgrad course at University which I started in September 2016 and was really enjoying. I was also doing 2 hours a week voluntary work at a local counselling agency. I think the course was a bridge too far and when one of my cats became very ill that just pushed me over the edge and I collapsed. And then something happened around 5/6 weeks ago which made me even worse (no idea what - just the effect) and caused very distressing anxiety symptoms making it impossible to actually get anywhere. That seems to have died down a good bit now (no idea why) but I'm becoming more easily exhausted and struggling with everyday living. I'm finding it harder to know how to manage this whereas before I was beginning to get some idea and thought I was on top of it, albeit living a much more restricted life than I had.
     
    AdamS likes this.
  8. MargUK

    MargUK

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    That's kind of what I was doing but it just worried me after it took literally a whole week just to get through ONE thread on anxiety - I just wondered if there was an easier way of navigating.
     
  9. trishrhymes

    trishrhymes Senior Member

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    Hi @MargUK , like you, I find there's so much going on in these forums that it can be overwhelming.

    I think, if you haven't already done so, it can be worth joining the ME assocation, as you get a free copy of their 'Purple book' written by doctors that is a pretty good coverage of current knowledge about ME - diagnosis, treatments, research etc. Or you can just buy the book of you don't want to join. I have found it helpful in getting an overview of what's known at the moment.

    I have spent the months since joining PR gradually exploring different aspects of how people with ME are exploring different approaches to self treatment as well as current research.

    For me, I've decided that, at the moment, there is no point experimenting with large doses of vitamins, with herbal treatments etc, as none of these is proven to work for everyone, and I really don't know where to start without any access to expert advice, supervision or testing.

    But I do completely get it that others choose to try everything they can find to try to get at least some improvement while taking the risk of making themselves worse.

    I'd take it slowly. The only thing, I think, that everyone her agrees on is that exercise based treatments are a no-no for anyone who has ME that includes post exertional malaise.

    I had a quick look, and there is a whole forum in here on adrenal issues that you might like to explore.
    http://forums.phoenixrising.me/index.php?forums/adrenal-dysfunction.122/
     
    Jennifer J likes this.
  10. Basilico

    Basilico Florida

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    Hi @MargUK , I completely understand how overwhelmed you are feeling...it's taken me awhile to really grasp how to use this forum efficiently, mainly because there is such a density of material to sift through, and I often stumble across really interesting supplements and ideas by chance while I'm reading about something unrelated.

    I would suggest to start by focusing on trying to do some searches that involve your symptoms. Very likely, this will lead you to come across some things that you haven't heard of before, and in reading about those things, other ideas will pop up as things mentioned in passing on those threads.

    I think that I remember from one of your threads you got PEM after gardening...(sorry if this wasn't you!) so you might want to trying searching for something like "how to reduce PEM" or "how to prevent PEM" or "how to improve post exertional malaise with supplements" try as many variations as you can with the symptom in the title of the search.

    Also, if you know that a particular user has a symptom similar to yours, you can try searching that symptom in the title of the thread, and put the user's name in the field underneath so that the search engine will bring up posts by that person on that symptom.

    If that doesn't help, if you see someone writing about a particular symptom or problem you have and they seem to have tried a lot of things, you can always send them a personal message "Start a conversation" and ask them for links to threads or useful information on that topic, and maybe ask them some more detailed questions about what they've done. I think you'll find that most people here are incredibly helpful and will be happy to help direct you.

    I know, for example, that @Hip has posted a lot of useful information about various supplements that have improved anxiety, perhaps you could ask him if he could post a few links to his previous threads for you to read through.

    You'll probably also find that many people on here have done some variation of a methylation protocol. My husband and I both did, but it didn't do anything in terms of improving how we feel. However, others have gotten various levels of improvement, so that is something you might want to look into. There is a section of the forum for methylation stuff, and there are some obvious "start here" threads like:

    http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

    http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    *You don't have to read the whole thread, as they are very long, but you can read the beginning to get a feeling as to whether you might want to pursue methylation at some point.


    Here are some threads you might want to read through, see if anything seems worth pursuing:

    http://forums.phoenixrising.me/inde...exertional-malaise-crashes.48438/#post-796639

    http://forums.phoenixrising.me/index.php?threads/glutathione-your-favorite-kind-brand.51932/

    http://forums.phoenixrising.me/index.php?threads/alcar-and-anxiolytics.52015/#post-860124

    http://forums.phoenixrising.me/inde...a-sam-e-catalase-no-pem-after-exercise.34446/
     
    Last edited: Jun 15, 2017
    Jennifer J and Learner1 like this.
  11. AdamS

    AdamS Senior Member

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    I'm sorry to hear that you're finding it harder to manage currently. The only advice I can give from experience is to balance activity with rest, if you wake up feeling groggy or unrefreshed then it's a sign that you're overdoing it. For me this was a good way to establish a baseline that I could achieve even on bad days. Hopefully you will find something to help you live a less restricted life than you are currently. :)
     
  12. MargUK

    MargUK

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    Hi @trishrhymes and thanks for this - that's a good idea to join the ME Association - I have browsed their website on occasion and found it helpful. And thanks for that link - @AdamS and already pointed me in that direction which I'd somehow missed in just browsing so I'll definitely have a look around that topic.

    I must admit I was feeling like you - there seemed to be so many vitamins and supplements and to me each new one would have to be tried and tested on its own for a while otherwise you'd never know what was causing what. Having said that, I am taking Vitamin D3 and have just started on B12 oil this morning. I agree - resting definitely helps but I'm getting really confused as to where my baseline is any more - for a few weeks there just getting dressed appeared to be exhausting me! I think I was also starting to panic because the symptoms I had recently meant I couldn't get anywhere and I was thinking how am I going to get help from anyone if I can't actually get to places??! And then just general worry that whatever is going on had become worse and moved on a stage.
     
  13. MargUK

    MargUK

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    Thanks! I'm quite surprised by your criteria though - I wake up in an absolute nightmare every single morning - I NEVER feel refreshed from sleep - but that can turn into a good/bad/mediocre day - it doesn't seem to be a sign as to how the day will go? I thought most people experienced this but I suppose everything is so individual with CFS.
     
  14. trishrhymes

    trishrhymes Senior Member

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    Hi again, pacing is an art that I have yet to master after 27 years with ME, but I'm getting a bit better at it now I'm using technology to help.

    I never found I could manage activity diaries - far to arduous to do and impossible to interpret.

    Now I wear a fitbit that tells me how many steps I've done each day, which I find helps a lot - I'm getting a feel for how many is too many and changing my behaviour accordingly. I'm now working on keeping my pulse rate below a certain level, and stopping an activity if it exceeds that.

    This site is very helpful on how to do this.

    http://www.cfidsselfhelp.org/library/topic/Energy Envelope and Pacing
     
    Jennifer J likes this.
  15. MargUK

    MargUK

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    Thanks @Basilico that's really helpful! I'll have a proper look at those links some day. I seem to get PEM from all sorts of stuff - there's no rhyme or reason to it at all. I can do an activity like babysitting for instance which will floor me one day but will be fine on another occasion and the gardening was a good point in question. Often just mowing the small patch of grass at the front will be enough - I can't do the edges on the same day or I'll be in trouble and yet one afternoon, buoyed up by feeling well, I tackled the (very long) weeds in the back and finished 3 hours later. Apart from very sore muscles next day I was otherwise absolutely fine. (Or fine as in a CFS 'fine' day!) Doesn't make the slightest bit of sense!
     
  16. PinkPanda

    PinkPanda thebiochemcorner.com

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    It's not easy to get a good overview. It happens to me that I think I have a good idea of the main topics and then I just found out about Lupus testing or Copper Toxicity.

    Here's a "raodmap" that gives an overview over things to test for with ME/CFS
    http://phoenixrising.me/roadmap-for-testing-and-treatment

    For me Phoenixrising is most helpful when I figured out a new topic or supplement to then find experiences and information with the searchbar or google. Also if you have a question on a topic you can post and people share their experiences.

    Some other health issues that I know of, just to look through and see if something could fit:
    -Leaky gut Syndrome/ gut health/ food intolerances
    -Histamine Intolerance
    - Detox
    - Copper Toxicity
    -Adrenal Fatigue like you mentioned above also in connection with important calming neurotranmitters, activation of the sympathetic nervous system and parasympathetic nervous system
    -figure out what basic tests to do: mineral or vitamin levels in the blood, Hair Mineral Analysis, neurotransmitter/ cortisol testing,..
     
  17. adreno

    adreno PR activist

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    I simply click on New Posts, and then read any threads that looks interesting. You will slowly learn over time. The threads are sorted into forums of specific topics.

    Also remember that most of the tests and treatments discussed here are completely speculative. One example is the "adrenal fatigue" you mentioned, which is nothing more than a fantasy internet illness.
     
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  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @MargUK

    If there is a specific topic that catches your interest the best way to search for threads on this is to scroll down the forums page to the bottom. There you will see the Resources Projects section. Select google site search and a page with a search box will open. Type your search in there.

    Also, if you find something interesting that you want to come back to use the bookmark tab at the bottom left of the post. Then when you want to retrieve it you simply click bookmarks on the upper right hand side of the page you are on.
     
  19. Hip

    Hip Senior Member

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    Anxiety symptoms (generalized anxiety disorder as it is called) and/or panic attacks are not uncommon in ME/CFS. Here is what worked very well for my anxiety symptoms:

    Completely eliminated my severe anxiety symptoms with three supplements!


    With beginners in mind, I compiled a roadmap document to guide patients to the treatments that well-known ME/CFS doctors use. This roadmap might give you a starting point, and then when you want to find more info, you can search these forums on a particular topic.

    There are also lots of good introductory books that you could read to get a better overview of ME/CFS. Your local library or bookshop may stock one or more of these.

    Erica F. Verrillo's book, Chronic Fatigue Syndrome: A Treatment Guide, is available online for free here, but for bedtime reading purposes, a paper book might be better.
     
  20. Basilico

    Basilico Florida

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    I have to say that I agree with this...years ago, my husband came across Adrenal Fatigue and we thought it applied to him, but after MUCH research we realized that not only is there no cure for Adrenal Fatigue, but in our endless reading of everything we could get our hands on about the topic, we did not come across a single person who had Adrenal Fatigue and was able to cure or improve it.

    The common recommendation to improve Adrenal Fatigue is to avoid stress. Well, number 1: that's impossible for most people. And number 2: even when people had reduced their stress they were not improving at all.

    So I think the Adrenal Fatigue is a bit of rabbit hole that will end up sucking away a lot of your time and you will not have anything to show for it. If you feel strongly about pursuing it, then do by all means, as this is just my opinion.
     

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