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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Binkie4

    Cervical Collar for car journeys and temporary relief at home. What do you recommend?

    https://www.amazon.co.uk/gp/product/B074DG55RF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 I bought a Philadelphia collar for long car journeys that had started to cause vertigo, nausea etc, sufficiently bad to close me down for two weeks. It helps but doesn’t resolve the problem totally. I...
  2. Binkie4

    Doctors in and around London, UK

    Initially I had awful side effects from acyclovir, namely 5-6 weeks of severe nausea, exhaustion. That cleared. It’s hard to say whether there is an improvement because I have developed comorbidities eg heart problems and it’s hard to disentangle. I will continue a while longer because there may...
  3. Binkie4

    Doctors in and around London, UK

    I see Dr Bansal and take acyclovir prescribed by GP on Dr B’s recommendation. Have been taking luteolin for several months - I think it’s to help with cognitive function - but I haven’t noticed any improvement. I also take CoQ10/PQQ and acetylL carnitine and D ribose. I think these may be...
  4. Binkie4

    Severe Mitral Valve Regurgitation? OI? Read this....

    Very glad to hear your follow up results @Sushi. Night to day is wonderful.
  5. Binkie4

    Royal Colleges instruct GPs to use GET with ME patients July 2019

    The ME Patient Foundation responded to the article in Psychology Today as follows The ME Patient Foundation 22 hrs MEPF Response to Psychology Today Article The Dark Side of Social Media Activism in Science, Scientists are targeted when results do not align with activist views - Stephen...
  6. Binkie4

    Epstein-Barr virus (EBV) reactivation and therapeutic inhibitors.

    @sb4 Please can you post Dr Kerr’s response here when you get it. Thanks.
  7. Binkie4

    A little confused about POTS

    @ryan31337 Thanks for all the info about POTS and OI. I have a diagnosis of hypermobility, mitral valve issues and am due to see a geneticist but need to sort out the possibility of POTS and OI. Would it be possible for you to pm me?
  8. Binkie4

    Dr Amolak Bansal still practicing?

    I think his charges are now £250 for initial consult and £150 for follow ups of 15 minutes. The initial consult is much longer. I see him at St Anthony’s on a Thursday but he does do a Saturday clinic occasionally. Yes, I do find him helpful. He has a pleasant, approachable manner. He can’t...
  9. Binkie4

    20 patients now found positive for CCI / AAI, there must be many more...

    @mattie Thanks for the information. Will get reading. Do let us know how you progress. Will you be going to Spain?
  10. Binkie4

    20 patients now found positive for CCI / AAI, there must be many more...

    I would be interested to see this information too, also the details of how many people improve after surgery. I spoke to my GP about CCI. ( Am waiting to see a geneticist re Ehlers Danlos). He said he has one or two patients with EDS and CCI issues, and knew of the need to find the right people...
  11. Binkie4

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @mattie Have you tried a Philadelphia collar? As an interim measure.
  12. Binkie4

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    As someone who stumbled across the information, I can confirm that I wouldn’t have known to seek out information about CCI. I do have some risk factors- hypermobility, mitral valve problems and a referral already made to a geneticist as well as worsening ME-but I would never have known the...
  13. Binkie4

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @mattie Hope your reaction to the test and the travel is less than expected. Good wishes for future progress.
  14. Binkie4

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @mattie I remembered you posting about your real difficulty with car travel, either here or on the other board. I have had some difficulty for a while but had a real deterioration last summer after a 270 mile car trip ( over 2 days), such that I was dizzy and lightheaded for the first 2 weeks of...
  15. Binkie4

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @mattie Glad you are making progress with a diagnosis. Can I ask if you have an Ehlers Danlos diagnosis, and how car travel is progressing? PM me if you prefer.
  16. Binkie4

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @BenH @JanetDafoe Is it ok to post the Stanford utube on other sites? I tried the link and was straight on without signing in but I was signed in and listening to Saturday. So fascinating and thank you again. @Ben H @janet Dafoe (Rose49)
  17. Binkie4

    Dercum's Disease/Adiposis Delorosa

    @PennyA Yes, the flares are interesting but distressing in weight gain. I only realised how bad it was after it had happened. I have overall weight gain but significantly worse on lower body. I am sure I read this was a feature of Dercums but lymphologist disputes it. Advises keto diet but I...
  18. Binkie4

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Am struggling to remember but has a paper been submitted on this? I seem to remember it in a bio posted about Dr Nemat-Gorgani
  19. Binkie4

    Drinking baking soda (sodium bicarbonate) may treat autoimmune disease

    Do I remember sodium bicarbonate being used for D lactate acidosis, which has been suggested as an alternative diagnosis to ME/cfs?
  20. Binkie4

    Dercum's Disease/Adiposis Delorosa

    Thought I would add my story to the mix. I was given a diagnosis of lipolymphadema in 2015 when I was 68 after pushing my doctor very hard for a referral. The following year I was advised to consider if I had Dercums, and I now have an appointment for assessment at the end of Oct. I was slim as...
  21. Binkie4

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    It is Dr Amolak Bansal. He sees his ME patients at St Anthony’s hospital, Cheam. I understand that Dr Bansal is unwell at present: expected to return in Nov or Dec.
  22. Binkie4

    MEGLATHERY MD: RCCX MODULE MAY EXPLAIN OVERLAPPING SYNDROMES

    Hi PennylA Just to say I now have a referral for a diagnosis of Dercums from a lymphologist. Very difficult to get to see one in UK. My primary diagnosis is ME/cfs for 10 years, lipolymphadema for 3 years, EDS h type, mitral valve prolapse 2 years and OI. I was average weight until the...
  23. Binkie4

    #OMFScienceWednesdays-ME/CFS CFSRC & SGTC team member: Mohsen Nemat-Gorgani, PhD

    Very pleased to see this research at the OMF. And like others, only sorry that Dr Simpsons work was not followed up earlier. I think he visited UK, US and Canada to spread the word. Just wondering if anyone's ME is being treated by heparin to thin the blood and with what results. I think Dr...
  24. Binkie4

    Janet Dafoe in hospital

    Good wishes @janetdafoe. Get well soon.
  25. Binkie4

    Janet Dafoe in hospital

    @janetdafoe Very sorry to read that you are in hospital for surgery. Sending very best wishes from London for a successful surgery and speedy recovery. Get well soon, Janet. :hugs: EDIT: name corrected. I don't know why post turned blue.
  26. Binkie4

    UK: URGENT: Please write to your MP to promote EDM by Carol Monaghan MP

    Have emailed my MP asking him to sign.
  27. Binkie4

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Yes. Low molecular weight Heparin is used here pre immobilisation to prevent clots, as described above, but I have never heard of it as a treatment for ME in the UK. You are prescribed it for this? Seeing ME doctor in April-could discuss it with him.
  28. Binkie4

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    "I may be using Lovenox short term soon (another form of heparin). It will be interesting to see if I notice anything from it" Please can you feed back @Sushi when you try it. I have not heard of heparin being used as a treatment by any UK doctor ( please correct me if I am wrong) but would...
  29. Binkie4

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Do you take Eliquis daily? Is it for a coagulation disorder? I only knew of people taking it if immobilised for shortish periods.
  30. Binkie4

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    I recently had some tests under anaesthesia. Dr Bansal recommended I be hydrated with saline prior to anaesthesia to avoid an ME crash. I was utterly fine, no pem, despite 3 days of testing. I wish hydration/saline could also be sorted out for us.