• Welcome to Phoenix Rising!

    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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    Is Graded Exercise Therapy GET still recommended by the NHS ?

    I know there has been a lot of hard work, effort & countless man/woman hours by a lot of people to prove GET is not effective & can be harmful but - Is Graded Exercise Therapy GET still recommended by the NHS ?
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    Is it still a FND if in a blind trial pill A stops the symptoms & pill B doesn't ?
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    Tried the smart phone but - sign the petition link is not connecting I have emailed the link to a friend (myself) but still not getting to the input name etc..
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    My husband & I share the same computer. He has signed the petition. I can not use the link to sign the petition in my name - it appears to recognise it has previously been signed. I have tried the link to the ME association page as well - same recognition problem I have also tried logging off &...
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    Can anyone recommend a good Neurologist?

    Can anyone recommend a Neurologist with some knowledge of MS & Parkinson’s that will listen to what I am saying as opposed to classifying me as a “nutter” as soon as I mention ME/CFS? I would ideally prefer someone in the North London / London area but will travel if necessary
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    New UK Petition: Debate in Parliament the lack of an effective policy for the treatment of M.E.

    The last time the petition was running I asked the HOC how my Mother who doesn't have an email address could sign the petition - this is part of the reply I received. Thank you for contacting us. Providing an e-mail address is an essential requirement when signing a petition. We do allow up...
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    Phenylalanine & ME - Who do I ask to see?

    I have found phenylalanine temporarily helps with a reduction of my MS/Parkinson’s like symptoms I have had a negative MRI & DAT scan. I think some form of diagnosis / medication could improve my life but am not sure if there is any test that would show if I have a deficiency or what...
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    Young Leader on the Road to Recovery and Helping Others

    The God of GET ?
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    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    I found a website claiming - "The Medical Research Council’s secret files on ME/CFS Margaret Williams 10th December 2009 It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time...
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    Guidance for A&E doctors re: ME/CFS (MUS)

    If you follow the link @Countrygirl supplied The section below is the section for patients. http://www.neurosymptoms.org/fatigue/4533053151 It has a booklet you can download http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GET%20guide%20booklet%20version%201%2022062010.pdf Pg 2 Warning...
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    http://forums.phoenixrising.me/index.php?threads/progesterone-infections-lung-disease-and-the-role-of-female-hormone-status-in-me-cfs.46839/
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    Medical Officer for England respond the MEA's petition

    http://researchbriefings.files.parliament.uk/documents/CBP-7206/CBP-7206.pdf Pg 15 It is important to note that NICE does not negotiate drug prices and only around 40% of drugs new to the UK market are evaluated by the NICE technology appraisal process each year. NICE does not decide on the...
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    MEA website survey: Should doctors be allowed to prescribe experimental treatments? (June 2017)

    My GP says there is nothing that I can be prescribed to help with ME/CFS. I do also see an infectious diseases specialist in ME/CFS. However I have confidence in my specialists knowledge & understanding in ME/CFS. I would be happy to try something if it was available in the UK & the specialist...
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    MEA website survey: Should doctors be allowed to prescribe experimental treatments? (June 2017)

    I was talking to a Doctor at liME on Friday and said that if I was given the choice of taking something that had a 50% chance of me walking out the front door & falling over or a 50% chance of me running around I would try it. I did also say that if researchers wanted samples from me I would be...
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    The role of IP-10 in Chronic Fatigue Syndrome

    Just been looking rapamycin up on the internet Wikipedia says Sirolimus is also known as Rapamycin I have found this website comparing the price of Sirolimus https://www.pharmacychecker.com/generic/price-comparison/sirolimus/1+mg/ Is Sirolimus the same drug ? How do you know if an internet...
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    The role of IP-10 in Chronic Fatigue Syndrome

    @JaimeS Not sure if its me but your link doesn't appear to work on my PC
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    Questions about the 24 hour saliva cortisol test

    Years ago I had a 24-hour synthetic ACTH test. The test started on the Monday morning with blood samples being taken over the course of 24 hours. I had the last blood sample taken on the Tuesday morning at about 9am & felt absolutely fine, normal, cured back to my pre ME/CFS self. I ditched...
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    UK - petition to hold a debate in parliament for CFS/ME treatment.

    I asked the HOC how my Mother could sign the petition as she does not have an email address- this is part of the reply I received today
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    Intention tremor

    And I thought I was the only one ! It started about 4+ years ago & gets worse after exercise - i.e. carrying a shopping bag for a few minutes & then trying to eat or drink is a nightmare. Don't know if it will help you or anyone else but I have found that Diet Pepsi caffeine free helps - in...
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    12th Invest in ME International ME Conference 2017 registration is open

    Would it be better to start a new thread in Members only headed? PR Members going to liME on 2nd June We could then see who else from PR is going & perhaps we can work out how to identify ourselves to each other?
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    UK - petition to hold a debate in parliament for CFS/ME treatment.

    2 signatures just added. How do you sign if you don't have an email address ?
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    OMF's End ME/CFS Worldwide Tour

    Have just purchased a ticket Hope I can make it on the day I look forward to meeting everyone
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    S. Wessely - Death threats, abuse, smear campaigns - Standing up for Science: 29 March

    "for preventing relapse after recovery" ???????????
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    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-Project-Implementation-Report.pdf Medically Unexplained Symptoms (MUS) Project implementation report March 2011
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    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    https://www.kingsfund.org.uk/sites/files/kf/esther-gathogo-charlotte-benjamin-pilot-enhanced-gp-management-medically-unexplained-sympthoms-kingsfund-may12.pdf It appears to infer in the definition that - Medically Unexplained Symptoms - Other terms to describe this group - Bodily Distress...
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    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Thank you for all your hard work. It has been wonderful to discover this forum with so many people who don’t have “CFS/ME” helping those that have diagnosis “CFS/ME” I am not a fan of conspiracy theories but – If “CFS/ME” were to be classified as a “psychiatric” condition it would mean that...
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    Dr Abhijit Chaudhuri UK

    Was that for a consultation in Glasgow or Romford?
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    Radioisotope bone scan & Ehlers-Danlos Syndrome

    Does any one know if radioisotope bone scan shows an increase in uptake of dye in the joints if you have Ehlers-Danlos Syndrome?
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    Would this help anyone with media responses to Dr White?

    Ciba Foundation Symposium 173 Chronic Fatigue Syndrome 12-14 May 1992 ISBN 0-471-93618-9 Page 310 Discussion – Non-pharmacological treatment White: On this theme of treating the physical and the psychological factors together, Silas Weil Mitchell was probably the most successful doctor ever...
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    ME/CFS Test? Can you raise your legs when lying down?

    Sorry for the lack of technical knowledge but is MCAS an abbreviation of Middle cerebral artery syndrome?