A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

CFS/ME in Australian Magazine Nexus Dec 2010-Jan 2011 edition

Discussion in 'General ME/CFS News' started by taniaaust1, Jan 26, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    I saw a mag last week in my Newsagent called Nexus (its a mag which writes about conspiratories etc) which has a 6 page article on "Porphyria: The hidden cause of PMS, CFS, ME and allergies?"

    It is a quite technical article talking quite a bit in it about food intollerances, MCS and some abnormality to do with cytochrome P450 which can cause CFS/ME symptoms but may be a form of Porphyria (to which apparently there is 8 different forms of this metabolic disorder which can be brought on after certain things).

    This article has certainly given me something to think about (I wish i could be tested for defects of of P450 enzyme ... which is involved in detoxifying things... maybe I can sometime find a place which does these tests).

    Interestingly some things we use to try to help CFS/ME are mentioned in the article as being also used with these kind of Porphyria issues .. (it mentioned glutathione)

    Anyway, I thought I'd mention this mag in case anyone else in Australia wants to get hold of it and give this article a read. Could as the mag says, some of us diagnosed with CFS/ME have one of the forms of hidden Porphyria?

    (It talks about many ones with Porphyria craving carbs and not doing well with not having a lot of carbs... I know Ive heard some here mention this).
     
  2. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    24
    Victoria, Australia
    Is this a weekly or monthly magazine? Is it likely to still be around Tania?
     
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,410
    London
    I saw this mag in the Nutricentre in London. Been expecting a magazine article or some publicity as a patient or someone connected seem to do a round of the CFS internet groups a few months ago.

    Porphyria as a possible cause for chronic fatigue has been around for a long time. It would not fit in with the epidemics. It's an old one that has been discusssed before. I'm not aware of a ME patient who has ever tested positive for this or found it to be the cause if their disease. I was tested a long time ago.

    The "difference this time" is that recently doctors who support this theory were claiming that they had a special test that was different to the older conventional one - which is always the way.

    Yes, there are always subgroups and missed alternative/better diagnoses. May be useful to someone, somewhere.
     
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    .. they were making the statement that it could be the cause of illness in "some" who have been diagnosed with CFS/ME.

    I have met one person who had a long term CFS/ME diagnoses in which it did end up being Porphyria. (I think its an illness in which not many doctors test us for

    It's a mag which comes out every two months. It is in the Dec 2010-Jan 2011 Edition. (so if you get lucky you may still find it in a newsagent).
     
  5. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    24
    Victoria, Australia
    I purchased this magazine today to read this article and I have only read about half of it so far.....however..

    ....I felt it was a reasonably balanced article and was in no way saying that ALL M.E/CFS people would fit this category but he was saying that perhaps a subset may have Porphyria...due to the very fact that up to 20% of the population are believed to carry the genetic defect or predisposition for this metabolic disease Porphyria after a toxic exposure.

    The people who the author suggests may be most likely to have the susceptibility and therefore worth testing for Porphyria, are people who perhaps fit the MCS category. These people may have activation following mould, mercury or exposure to other metals or toxins. They comprise people who show poor tolerance to some of the following such as, caffeine, alcohol, certain foods such as citrus, the nightshade family of foods (tomatoes, potato, peppars), spices, MSG, high tryptophan foods such as turkey, chicken, pumpkin seeds, sulphur containing compounds such as onion, garlic, broccoli, cabbage and sunlight, heat, even vitamin and mineral supplements.

    There's a whole lot more but as I said I haven't read the whole article yet. I may get a chance to post further but it's certainly worth Googling, Porphyria as a subset of M.E people may have this serious disease.
     
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,410
    London
    That's not what the "headline" said of course. There are always going to be "subsets" of patients who have been misdiagnosed with .... anything.

    If one has been misdiagonsed and finds that it is Porphria and the new dx fits the person's symptoms then it is a misdiagnosis. It's not the answer to ME or CFS. It's not a subset. It's a different disease.

    This could be true of a myriad of many different diseases. If it's a common problem then every single other disease could have it as a "subgroup".

    They could keep churning out these articles every single month and keep going forever now.

    Don't get wrong - I'd love to pick up a magazine and read about a possible disease that I could have other than ME. It would be a dream.

    I don't like the way mazagines use articles this this. A misleading heading to sell to patients. Then inside another common "old chestnut" possible misdiagnosis - again!
     

See more popular forum discussions.

Share This Page