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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Updating now on Elle's trial of DCA. Recap: We thought this should be safe to try, as DCA has been taken by young children for long periods. We thought it worth trying as in the reported trial with 22 adults with ME 'Ten patients (45%) experienced significant improvement of their health...
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    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Well, that'll be interesting! Elle's going to try DCA, probably beginning Aug 18th. She's started l-Carnitine, ALA & B1 already but she's going away for a few days & will begin DCA once she's back. We'll update here. Of the PR members who started this & reported some success last year none say...
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    Pregnancy and ME/cfs

    I'm pretty certain Jessica Taylor-Bearman (A Girl Behind Dark Glasses / The World of One Room) experienced improved health during her recent pregnancy. And I remember Professor Don Staines at an IiME conference a couple of years back saying his daughter's health had improved during pregnancy.
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    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    The point for us is 10 of the 22 had a positive response! I'm not sure I've heard of much else for pwME that can claim 45% positive responders. Elle's tried dozens of things over the last 5 years & we know most things don't work. Finding things that do, even a bit, could change her life though...
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    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Elle's experiencing some side effects with A l-Carnitine, but she often finds issues with new supplements settle if she perseveres for a few days. ALA seems fine & she's hoping to add Thiamine next & DCA by the end of the week. She'll take the DCA in the morning on an empty stomach - unless...
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    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Not sure what you mean by this @gregh286 - is it more effective if you don't eat? When you're taking it, when do you eat?
  7. P

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    We missed this thread first time round, we've read it now though & my partner's going to try it. @Chris @msf @Moof @gregh286 - are you still taking DCA, how is that going? Anyone else tried it, still on it, or not, and got some longer-term feedback?
  8. P

    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    We e-mailed Dr Gilete a week ago at info@drgilete.com, but we've not yet had any response. We asked for confirmation of Dr Gilete's exact MRI requirements, where & how to send the images, any other information required, cost and how to pay for Dr Gilete's evaluation. Has anyone else needed to...
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    Need advice quite urgently

    Thank you everyone. She's had 2 portions of plain rice today & I'm just making the third. She's had almost a litre of rehydration solution and another litre or more of boiled water with ginger infusion. And its all stayed in. She's quite resistant to doctors as so many have told her there's...
  10. P

    Need advice quite urgently

    My partner has had ME 4.5 years, beginning with shingles. It's always been mild, she gave up work but managed a restricted life. She's never had any indication of gut issues (all test results indicated very good gut function) but she lost a lot of weight in a slow slide over about 18 months to...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    After we read the early part of this thread & around the subjects of upper-spine / cerebro spinal fluid, etc., Elle signed up for Perrin osteopathy & she's now 6 sessions in. The therapist does some cranial osteopathy & moves her neck (& all sorts of other bits) about. Elle's sure it's making a...
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    Who is going to InvestinME 2018?

    We are!
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    #MillionsMissing London 2018 outside BBC Broadcasting House

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    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Elle's tried CoQ10 three times, with 2 different brands, because it's supposed to help with energy, including recently to try 'the grapefruit effect'. Each time it's coincided with (caused, we think) dizziness, nausea, stomach pains and aching. Each time the effect's been so negative she's...
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    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Just found this fascinating thread. It's amazing & uplifting to read your posts @BeautifulDay. Sarah Myhill says in her book that she's never dealt with a cfs patient who wasn't deficient in CoQ10. That said, my partner has cfs and didn't test as deficient in CoQ10 - I've been meaning to drop...
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    Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)

    This seems to make so much sense. There’s a company that does private mris at locations in London for £199 each if you can get there early on Sat/Sun mornings. You need referral by a doctor, we think we could get that, but either from Elle’s GP or her nutritional specialist doctor. Does anyone...
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    Dr Sarah myhill mitochondrial dysfunction test

    @godlovesatrier What is the water with magnesium in it called / where does it come from?
  18. P

    David Tuller: My brief encounter with Prof Crawley

    We're up for letter writing, or any other way we can help. We're London based if that's relevant.
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    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    An academic spoke in an open meeting. An attendee who had listened quietly throughout the presentation used the Q&A to ask a question about a claim she had made in it, and another which gave her the opportunity, in a very supportive environment, to explain why she has previously claimed...
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    David Tuller: My brief encounter with Prof Crawley

    Where / when will the video be available? As we're learning from recent wonderful research symposium events, we can learn so much from seeing scientists present their work, and their open and honest response to legitimate questions.
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    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    Yes! She had had Glandular fever many years ago and had swollen lymph nodes in her neck from time to time from then on. Tenderness at the Perrin point was there 8-10 years ago. 3.5 years ago her cfs began with an illness & rash, diagnosed as shingles, followed by repeated illnesses with...
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    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    Eight or ten years ago my partner's osteopath said her lymphatic system needed to drain, & that she could drain it by massaging at this point, which was tender (Perrin point). Years later, 3.5 years ago, she got cfs. She has the Perrin point tenderness today. How can that fit with 100% of...
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    Dr Myhill protocol

    My partner Elle started to follow Dr Myhill's protocol about a year ago, building up to it supplement by supplement. She quickly found a number of the recommended supplements caused problems for her one way or another (allergy / sensitivity / gut objected / etc), so she substituted different...
  24. P

    I am having the best day...

    Please do go on updating @TiredBill. News that someone has found a way to improve things is so good to hear and if this is a way to a lasting improvement for even a small subset of people with cfs that will be spectacular.
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    I am having the best day...

    How did yesterday go, & how are you doing today @TiredBill?
  26. P

    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    Our MP Ruth Cadbury just confirmed she's signed. Here's her response: Thank you for contacting me recently about NICE guidelines for Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) and the related Early Day Motion 271. I sympathise profoundly with anyone affected by ME. It...
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Sarah Myhill probably sees some people who believe they have CFS / ME but actually have burnout. As a doctor she'd want to help them all - her insistence on healthy eating / lifestyle might sort out some of the burnouts without need for further treatment.
  28. P

    Advice on friction over housework please (CFS and OCD don't mix!)

    Surprised no-one suggested @lior & housemates get a dishwasher. The cost shared between 4 wouldn't be that great. If the bullying jerk objects, as he's happy to do his own dishes, buy it between 3 & stipulate that as he didn't pay he doesn't get to use it.
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Its great that there’s a community which can fight together against shockingly powerful, pervasive and insidious opposition. We need the cacophony of discussion. The eminent doctors dealing with the establishment; the ones prepared to stay at the coal face, treating people with cfs regardless...
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Frozen screen / faces - yes!