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Mirror: Woman, 28, goes from keen runner to year in dark room because of severe disorder

Discussion in 'General ME/CFS News' started by Kalliope, May 1, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Woman, 28, goes from keen runner to year in dark room because of severe disorder

    Jonathan admits he has seen his beloved fiancée’s character slowly slip away without any real support from the NHS in Wales.

    “The only things offered by the doctor were antidepressants, which made Natalie’s ME worse, and a referral to a rheumatology department who told me they were unable to do a home visit and weren’t even able to hold a phone consultation.

    “The lack of understanding for Natalie’s condition was stark and worrying.”

    Jonathan said the current NICE guidelines for treating ME, which recommend cognitive behavioural therapy (CBT) and graded exercise therapy (GET), are “archaic” and can actually make sufferers worse.

    “ME patients like Natalie are still being widely ignored due to the NICE guidelines not offering effective therapy," he said.
     
  2. Trish

    Trish Moderator Staff Member

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    It's a very sad story of yet another person struck down to very severe ME and getting no help at all from the NHS, not even a home visit from a doctor.
    The thing that confuses me is this:
    It says it's currently being researched as a treatment for dementia. Does anyone know anything about it, I've never heard of it. I wonder who the 'ME specialist' is who is recommending it.
     
  3. Wonko

    Wonko Senior Member (Voting Rights)

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    No, but a 'while' ago someone was trying to convince everyone that a similar idea, just with blue light, could cure everything - so it's probably just a rehash of that.

    The same person was also into 'grounding' so....lol

    Surely the brain is predominantly 'bathed' in red light anyway?

    At least for those people who can handle having the blinds/curtains open.
     
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    It is very odd. The interpretation to be drawn from the piece is that the patient in Wales has not been downstairs for almost two years, her partner has spoken to a doctor in England and he has recommended this treatment which entails crowdfunding. Should not a patient be actually seen, examined and assessed before such advice is given? It's a bit of a long shot.

    One understands the desperation, but it should not have to come to that.
     
  5. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I did a quick search and glanced through the results and notice that there's interest in it as a therapy for several things including some eye conditions and SFNeuropathy including a few trials. It also sounds as though it's been embraced by some money making possibly woo merchants to me. I haven't got the capacity to read any of the search results but so far I'm sceptical.

    Always happy to be proved wrong and I wish Natalie well.

    edit for clarity
     
  6. chrisb

    chrisb Senior Member (Voting Rights)

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  7. wdb

    wdb Senior Member (Voting Rights)

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    There are more details on the gofundme page.
     
  8. JemPD

    JemPD Senior Member (Voting Rights)

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    From the piece @chrisb found I cant tell if PBM is woo or a genuine thing? Although to be fair i not up to reading it all.

    Wish Natalie well though.

    ETA - to clarify that my response was to chrisb's find, not the mirror article.
     
    Last edited: May 1, 2019
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    Same problem as with the blue light, how's it going to get any distance through the skull? So all the head based applications are suspect, in my eyes, which given the enthusiasm shown for them is equal to the other applications makes them suspect as well.

    Placebo IMO. Possibly combined with normal physiological responses to seeing red things.

    I know the NHS is pretty rubbish with a lot of things, and has got a lot wrong e.g. the water dilution thing, but until they show an interest..........
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    The article says that clonazepam has been 'shown to help' pwME in terms of their cognitive ability... is that accurate? I'm not aware of it at all. Isnt it a sedative? it's hard to imagine how a sedative would improve cognitive function... I describe my cognitive function as being 'sedated'... ??? :confused: does anyone know anything about this?
     
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  11. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm not sure about that at all, I was briefly on it to help me function slightly better outside, so I suppose it increased cognitive ability a little, but not in the way people normally mean.

    At the time I put it down to it giving me slightly better, and definitely longer, sleep, as the effects I saw were equivalent to being just a little more rested.

    I dropped it within a month as the side effects were unacceptable.

    Once asleep I didn't wake, no matter what, until I woke up naturally.

    This caused a few problems, and a lot of work.
     
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  12. ladycatlover

    ladycatlover Moderator Staff Member

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    I searched the PBM thing too. Found a long page written by Myhill on chronic infection which mentions light therapies. TBH I think she's a purveyor of Woo, but others have found her helpful.

    A lot of the work on PBM seems to have been done on mice. Supposedly good for Parkinsons and Dementia (though didn't find mention of what kind of Dementia).

    I didn't read much on it, and it all sounds like Woo to me. I'm afraid that it'll turn out to be the usual case of grabbing onto any wild hope. Feel very sad for the lady concerned, and her partner, who obviously is trying very hard to help her.
     
  13. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Interesting @chrisb, thanks.

    I'll need to go back and read again properly when fresher but a couple of quotes:

    Well the mention of mitochondria and ATP caught my attention.

    Figure 3 in this paper is well worth looking at imo. It's a cure all!? I don't know what to make of this but still suspicious. I don't believe in cure alls.

    The writer of this article :
     
  14. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I suspect photobiomodulation warrants it's own discussion thread. Because of the claims being made for it, including safety, it sounds attractive and people will try it.
     
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    I am sorry if I have led people astray. I have major doubts about this. My comment was mainly directed at the title "Shine a light", which I presumed would be recognised as a well known euphemism.
     
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  16. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Yes I understood you :). It's got red flags all over it. No such thing as a cure all. I can see a lot of people spending money on it though.

    eta (perhaps my post sounded supportive? - it wasn't meant to be)
     
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    The mirror article links to two other articles with similar but different stories one a “recovery” from better diet. The common theme appears to be individual fundraising. Not clear to me why this sort of story gets picked up by them more than ME Association personal stories.
     
  18. wdb

    wdb Senior Member (Voting Rights)

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    Looks to be a variation of what is more generally called Low-level laser therapy, from Wikipedia

    Low-level laser therapy (LLLT) is a form of medicine that applies low-level (low-power) lasers or light-emitting diodes (LEDs) to the surface of the body. Whereas high-power lasers are used in laser medicine to cut or destroy tissue, it is claimed that application of low-power lasers relieves pain or stimulates and enhances cell function.

    Names
    Variations of LLLT have gone by a variety of alternate names including low-power laser therapy (LPLT), soft laser therapy, low-intensity laser therapy, low-energy laser therapy, cold laser therapy, bio-stimulation laser therapy, photobiomodulation,[12] photo-biotherapy, therapeutic laser, and monochromatic infrared light energy (MIRE) therapy.[13] When LLLT is administered to so-called "acupuncture points", the procedure may be called laser acupuncture. When applied to the head, LLLT may be known as transcranial photobiomodulation, transcranial near-infrared laser therapy (NILT) ,[14] or transcranial low level light therapy.

    Medical uses

    Various LLLT devices have been promoted for use in treatment of several musculoskeletal conditions including carpal tunnel syndrome (CTS), fibromyalgia, osteoarthritis, and rheumatoid arthritis. They have also been promoted for temporomandibular joint (TMJ) disorders, wound healing, smoking cessation, and tuberculosis. While these treatments may briefly help some people with pain management, evidence does not support claims that they change long term outcomes, or that they work better than other, low tech ways of applying heat.[15]
     
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  19. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I’m not sure if it’s referring to the discussion usually in severe circles where people find benefits from benzodiazepines and hypnotics in general including brain function. Eg whitney Dafoe is given or takes Ativan to enable him to interact sometimes, there was mention he did that in order to see Jen Brea recently. It’s anecdotal because there’s not really research like this but there’s threads too where others have reported benefits. I get these benefits btw
     
  20. JemPD

    JemPD Senior Member (Voting Rights)

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    Thanks for that @Cinders66
    How fascinating that a tranquilizer would help, i've always shied away from anything that would be calming/sedating etc, pharmaceutical or otherwise, because at my worst i feel so sedated I cant move or think so it always felt counter intuitive to take anything sedating (unless i happen to be very anxious about something). But perhaps i am wrong to be avoiding without testing. Something to ponder, thank you for sharing.

    I'd be interested to hear more about how they benefit... if you, or indeed anyone else felt like/up to sharing. Perhaps that would be better in it's own thread though.
     
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