For Pat Palmer & others re AFMEs journal "Interaction"

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 6, 2003.

  1. tansy

    tansy New Member

    Hi Pat

    Your comments about Action for ME's journal "Interaction", on one of the few days my brain was working a little, got me thinking. As you know I helped run AFME for years in the early days when it was an exciting and controversial organisation.

    I have most of the early issues of their journal "Interaction" in which I was involved and believe me you would feel very differently about those. The research findings were more fully explained, doctors with bad attitudes were more vigorously challenged, and all the info we could find on similar approaches to those you are busy informing everyone on were included. We did also include info on allowances, getting help, coping with the illness etc.

    When I compare them to more current issues there is no comparison. However, these current issues are a whole lot better than they were in the period when I beleive they lost their way.

    Well the reason for this post is that I think you should write an article including all the info you have so generously researched and explained to us. It needs to be comprehensive but easy for readers to understand and not so long they will not print it.

    Are you up for this because at this moment in time you'd do a better job of it than I can. You would not only guide others into better health but you would make the organisation wake up as to why this particular approach does help.

    Cheers

    Tansy
    [This Message was Edited on 06/07/2003]
    [This Message was Edited on 06/07/2003]
    [This Message was Edited on 06/07/2003]
  2. pinkquartz

    pinkquartz New Member

    if pat is interested and feels up to it then your idea is good.........

    i wonder if they would welcome a regular column with info taken from the board here....they do run an advert for prohealth supps

    the custom and handling charges are rather steep aren't they . they charged me almost as much as i spent on the supps !!!!!

    sorry that was me wandering off on a tangent.....did u read my repl on other thread ?


    i remembered Dr. Shepherd was sacked as you say the others resigned, but i am not going to bother to read anymore on the MEA, need my brain cells for recovery !
    cheers,
    pinkquartz
    pinkquartz
  3. tansy

    tansy New Member

    Hi

    Yes that is a good idea but I have too much to sort out for myself to chase it up just now. If Pat, or someone else, could put an article together I can get someone I worked with then to look at it too so it will not just be the editing panel who consider it.

    There are a lot of people running AFME now whom I don't know, so I have no idea as to how they will react. Immune support advertise with them, and the message board is accessible from that site. Immune support is also listed in their internet contact list so they may not think it necessary.

    But it's a great idea.

    Oh and yes I did read your reply on the other thread. Thanks.

    Cheers

    Tansy
    [This Message was Edited on 06/07/2003]
    [This Message was Edited on 06/07/2003]
  4. PatPalmer

    PatPalmer New Member

    Thanks fo the compliment Tansy, Your idea is a good one, and although writing hasn`t been my forte, I am going to have a go. Guess I should if i`m criticising a publication.

    I had a closer look at the mag yesterday morning and I was impressed by the amount of literature provided to find help.
    They also have articles on coping, but oh, so boring... Rattles on forever.

    It`s the lack of substance, and immediate advice on the simple things like diet that can be so easily introduced to make a difference to someones life.

    Trouble is, I would have so much to say - be difficult to keep it short and sweet.

    It`s a terrible scenario, because it`s the afflicted who need the information/education, - yet have tremendous difficulty absorbing that vital info to help themselves.

    I can remember reading about Olive Leaf Extract almost 3 years ago, (I was very fagitued at the time) and just kept getting lost with the terminology which just went straight over my head.
    There are some fantastic articles posted here by Pro Health, but I can bet it`s only read by 2% of people who log on to here.

    I`ll let you know how I get on and thanks for the encouragement.

    Love Pat.

  5. tansy

    tansy New Member

    Hi Pat

    I really think you are the one best placed to do this. I believe they would find it difficult to refuse publication providing it's written the right way. My brain's really bad, concentration goes from 2-5 secs so work in little bits and then attempt stringing them together. But in the past I have written articles so if you like I can check it over, but I can't guarantee being aware of all it's contents - really bad on detail. I have still have managed to hang onto being able to grasp the overall view on my better days though, have had to learn to be good at skim reading, go back with paper and pen later. I'm sure I saw something written by a board member indicating she'd worked in journalism.

    You only need to give a brief explanations on the whys and wherefores etc, but provide means of access for more detailed information. If you think about it the diet, sea salt, water, digestive enzymes etc, are relatively easy to follow. Lots of readers are already aware of candida and need to know about other microorganisms and coagulation for which there is a non pharmaceutical option.

    I know we all have cognitive impairments but I also believe if people really want to help themselves they will do so. As my father so often quoted to me "you can lead a horse to water but you can't make it drink". I was always a bit of an activist and educator. It's so much healthier to do something about what bugs (pun intended) you than to let it sit and fester. If that goes someway to changing the situation for others then so much the better.

    I feel sure that if it does get published many readers will give it a try, if they too improve the word will soon get round and the medical advisors will have to take note. It is possible to that if AFME take it seriously you may be asked to produce a more detailed info sheet. I'm going to contact someone who was on the council of management with me over this and other things so I can inform him all this is in the pipeline.

    You could be responsible for a whole new way of thinking within what is clearly now the only effective ME/CFS organisaton in the UK. That's exciting.

    Cheers

    Tansy


    [This Message was Edited on 06/08/2003]
    [This Message was Edited on 06/08/2003]
  6. pinkquartz

    pinkquartz New Member

    what if the AfME like Pat doing a column then maybe someone, maybe me, don't know , could try and tie in Prohealth to do a selling thing with their products...so we can get them over here with out the huge custom fee.

    Cos if the column was a success people will want to try out the supps.

    just a mad idea
    pinkquartz

  7. tansy

    tansy New Member

    That's a brilliant idea. They already have a deal with Bio Care which means we get cheaper prices and AFME receive a donation too.

    Don't have my new addy yet: seething now, they have messed up twice now and I need these new addys before I proceed with really important issues. When they finally sort it I'll let you know via e-mail.

    Got caught out by invoice from couriers which arrived yesterday, at least I didn't have to travel to main post office this time though. It's outrageous enough that we have to be our own doctors, pay for our treatments, source them overseas, then have to pay VAT and the couriers additional doing the govt.s work.

    Hope you're not too bad today. Weather here is warm and breezy. Good quality air and no humidity, just as I like it.

    Take care now.

    Cheers

    Tansy
    [This Message was Edited on 06/08/2003]