The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Lord Chief Justice's daughter-in-law with severe ME improving on three treatments

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 12, 2014.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.dailymail.co.uk/health/article-48150/Fresh-hope-ME-sufferers.html




    Read more: http://www.dailymail.co.uk/health/article-48150/Fresh-hope-ME-sufferers.html#ixzz3LgjsXejw
    Follow us: @MailOnline on Twitter | DailyMail on Facebook
     
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  2. alex3619

    alex3619 Senior Member

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    The effects of classic encephalitis are generally unappreciated. It can devastate people, has a high death rate, and can lead to serious brain damage. It might also be why I have ME.
     
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  3. Countrygirl

    Countrygirl Senior Member

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    Yes, my downward spiral began with what was diagnosed in hindsight as encephalitis when I was a student. I was never the same again and deteriorated with each fresh infection and then chronic exposure to a group of organochlorines triggered severe ME.

    I have also found that any brain impact (I have had three-stroke like episodes caused by severe and rapid hikes in BP) triggers a severe exacerbation that mostly confines me to the couch or bed for many months.
     
  4. alex3619

    alex3619 Senior Member

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    High bp is one of my issues, which confuses some docs as I also have severe neurally mediated hypotension, and my high bp partially protects me from that. So far I have not had any strokes, but its always a risk. Strokes can severely impact anyone, not just those with ME. They are highly disabling in their own right.

    One of the treatments used by the lady in the article was heparin. This helps many patients, but I suspect I could not tolerate it. She found a good combination for her, but I wouldn't presume this will work for everyone, though I would not like to discourage people from trying under appropriate medical supervision.

    The other two treatments were growth hormone and antibiotics. We well know that antibiotics work well on a subset, though growth hormone is often not discussed and I am not aware how many are on it, though I do hear about it from time to time.
     
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  5. Bob

    Bob

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    Interesting. I'm not sure what i think about those particular 'treatments'. I've not come across them before as potential therapies for ME. Perhaps growth hormone might potentially help restore some strength and balance to some patients in the chronic stage of ME. I've not heard of any ME patients having any therapeutic success with antibiotics; When we discuss antibiotics, it's usually when people are saying that antibiotics were a trigger for their ME. And I've never come across heparin being used in that way. It all sounds very experimental. Interesting article.
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    I didn't read the whole article (apologies) but can comment on heparin as I've used it. For those of us who had a positive ISAC test for the type of hypercoagulation that has been found in many ME patients, low dose heparin injections over a period of months seems to help about 50% (or so my doc reported). They did help me quite a lot.

    Sushi
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    Growth hormone as a ME/CFS treatment fad many years ago. It did certainly help some. Many of us are apparently deficient in growth hormone due to this illness. I dont know why no one seems to trial this anymore (maybe due to it being a costly medication?? or just hard to get onto??).

    Its one of the things I wish I could get tested and possibly trial.
     
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  8. alex3619

    alex3619 Senior Member

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    There was a clinical trial of heparin some years back in the US. For a time it was one of our great hopes ... you know, a bunch of people got better, then a bunch more got invested in the idea this might be a cure. It didn't pan out, but it does help a subset of patients.

    Its often the same with antibiotics and antivirals.

    Growth hormone has not, to my poor memory, had a proper trial, but I could be wrong about that. It has however been tried every now and again.
     
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  9. Ema

    Ema Senior Member

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    Heparin can also be helpful for babesia infections.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    When my Endo did initial blood tests on me in 2013, I had low growth hormone results twice. He said however, the definitive diagnosis required a brain scan and some kind of stim test (forget the name) where you are at a lab all day and they do like 9-10 blood draws :eek:.

    I declined the whole thing but he said without those tests showing low growth hormone, insurance denies the HGH shots and they are several thousand dollars per month. He also did not think they would work for ME/CFS (but he was willing to prescribe them if I did all the testing and insurance approved.)

    I never pursued it b/c at the time he also diagnosed me with Hashimoto's and I started on thyroid hormone instead. Has anyone done all these tests and taken the HGH shots and were they helpful? I remember one other thread about this many months ago but forget the details.
     
  11. Mij

    Mij Senior Member

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    I thought the theory was based on an infection being the cause of hypercoagulation? Or is taking heparin only for those with hereditary factors? Did you take both anti-virals or abxs with heparin? I had 2 positives on the ISAC panel pointing to an "inactive infection" and taking heparin was supposed unleash, if you will, the infection.
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    Yes, that is how I understood it too--viral and/or bacterial infections. I didn't take antivirals at that time because Dr. David Berg hadn't yet developed that part of the protocol.

    Sushi
     
  13. Mij

    Mij Senior Member

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    But you felt improvement from just taking heparin?
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    Yes I did. I took it for about 6 months then followed with nattokinase.
     
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  15. Daffodil

    Daffodil Senior Member

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    woo hoo! another vote for antibiotics!
     
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  16. jimells

    jimells Senior Member

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    Have you had doctors insist on treating hypertension? I had one doctor (for two appointments only) threaten to withhold Imitrex (the only med that helps my migraine - not even opiates help) if I "didn't get [my] BP under control".

    This "doctor" also claimed ME/CFS doesn't exist and that I just needed therapy and exercise to treat my non-existing illness. Makes sense to me. Sort of.
     
  17. alex3619

    alex3619 Senior Member

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    Yes. Worse, we settled on ACE inhibitors. It is currently looking like that was a bad choice. I may say more on this in a month or two.
     
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  18. jimells

    jimells Senior Member

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    Uggh. I'm sorry to hear that. Sure is hard to figure out which treatments might help. And which ones might hurt.
     
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  19. ukxmrv

    ukxmrv Senior Member

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    That Daily Mail article is from around 2002. They dumped a lot of old articles on the internet and they come up with todays date. You can usually tell it is an old one as there are no comments underneath and it says that the comments are closed. Keeps happening with Daily Mail articles.

    The reason I think it is from 2002 is that there was a reference to the CMO report on CFS in the previous article.

    No idea how Nuala B is today. There are other mentions of her on the internet after that.
     

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