1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

The time to act is now!

Posted , 7 users are following.

pet48859
pet48859

Hi everyone, I’m new to the forum, although I’ve been lurking for many years, reading some posts (mostly the positive vibes where I can) but after recent research I felt the need to connect. Like many I rest around 18/19 hours a day, my phone being my lifeline, Constantly researching & looking for answers. As you are all probably aware It was m.e awareness week recently & there has been some real success from it & a real awareness on the condition all over the spectrum. I don’t use social media but wanted to reach out to people to share my thoughts & findings, as it’s really helped to give me hope that one day they will find treatment & a cure but at least in the mean time we will hopefully get acknowledgement that it is a physical condition & robbing people of their  lives - not phycological like most GP’s believe! We are now starting to be heard at last!! There is a journalist & broadcaster called Gary Burgess who was diagnosed with the condition a year ago & he has started a weekly podcast. He talks to all the right people & asks questions that we ourselves would be asking & wanting answers to, so he is a very good advocate. I keep up to date with research & check on the m.e association web page most days. You can listen to these interviews on their web page - meassociation.org.uk/podcast or on iTunes or type his name & the m.e show into google which should also work. He airs one show a week on a Monday, there are 3 so far & he’s spoken to some very interesting & influential people. The 1st show he spoke to Jennifer Brea, who we all know released a film recently documenting her life & struggles. The 2nd show he spoke to Dr Charles Shephard - an m.e medic who’s had the condition many years himself but currently manages at around 70%, he does some very good work & heavily involved in research & the Biobank. The 3rd show he spoke the Scottish MP Carol Monaghan who managed to get a slot for a debate in Parliament, discussing the discredited pace trial, the revision of the NICE guidelines, fighting for fair treatment & more funding into scientific research. Although she isn’t a sufferer herself she is adamant to raise awareness for us to get the support we need as she has seen & heard how it can devastate lives. Please have a listen when you can.. ( you can easily pause the interviews & keep going back to them) in my opinion  it will really give you a glimmer of hope, as I know it has me. The missing millions event was global & helped raise awareness not just with the public but also on a government level. Let’s share & spread the word further. Keep smiling everyone, I feel we’re closer to getting some answers - I feel it in my bones!! The time to act is now!! 🙋??? 

2 likes, 17 replies

17 Replies

Next
  • elaine62759
    elaine62759 pet48859

    Posted

    Thanks for sharing this info. Will definitely have a listen. Never give up hope!!!
  • lili07065
    lili07065 pet48859

    Posted

    There are many studies out there, many of which have and are squandered and squandering funds on quests and directions which cannot produce any significant results and do not come any closer to finding causal links for the disease. It's origins remain hidden - it is "the Ghost Disease" and studies for this remain underfunded.

    Rather than concentrating on how and why the infection occurs some in the research community concentrate on Cognitive Behavior Therapy and the like.

    What would you all in the UK like to revise in NICE?

  • Beverley_01
    Beverley_01 pet48859

    Posted

    Thankyou Pet for your exploration, findings and informing us all of these pieces to listen to. When i have some listening space I'll check it out.

    Beverley

  • lili07065
    lili07065 pet48859

    Posted

    Yes, but my question was about NICE revision(s).

    Can you elaborate on this?

    • pet48859
      pet48859 lili07065

      Posted

      Hi lili, all I heard on the interviews were that the guidelines needed to be revised as graded exercise therapy were causing a lot of m.e patients to relapse so they were calling for it to be revised. I’m not an expert. I just wanted to share the info on the 3 interviews as I found them very interesting. I hope you find the same if you listen. We’re all unique  & will each take something different when we listen, but I know if helped me so hoped it would help others too. 

  • jackie00198
    jackie00198 pet48859

    Posted

    Thanks for your very informative and upbeat post! I, too, think we're getting closer to some answers. According to a speech Omar (Jennifer Brea's husband) gave at our local #millionsmissing event, what's sorely needed is money for research. I hope some of us who are able can make this happen. 

    • pet48859
      pet48859 jackie00198

      Posted

      Hi Jackie, yes you’re right more money is needed for research. I heard recently more money goes into research for hey fever than cfs/me! 
    • jackie00198
      jackie00198 pet48859

      Posted

      Yes. The NIH (National Institutes of Health) in the U.S. spends more money on research into hay fever than that into ME/CFS. 
  • lili07065
    lili07065 pet48859

    Posted

    They got a 12 million dollar grant for CFS research last year. It appears that the first lead researcher and doctor has left and been replaced and the initial goal (s) redefined although the latter I am not certain of. Looking through the available material on the the study site, it does not look as if it will yield anything useful; however, I will keep checking back.
    • pet48859
      pet48859 lili07065

      Posted

      Wow! Such a lot of money was granted over there in the states (I’m assuming you’re in the states) are you aware why the lead researcher & doctor left? Hopefully the work they’d done was carried on. It does seem to be baffling a lot of scientists, but why is it you believe it’s money squandered? Is it that you feel it wasn’t used properly? Can I ask - do you have m.e? We need these tests & more scientific research. Yes the results may have been inconclusive so far but things were surely ruled out in the process. Did you hear of the Rituximab drug trial?  It was sounding very promising. It seemed to help some but not others, so it looks unlikely it will trial in the UK, although it hasn’t been ruled out as yet. (I personally believe it could be due to lack of funding that may hold it back but I could be wrong) So waiting for updates on that. 

    • lili07065
      lili07065 pet48859

      Posted

      I posted again about the NIH study this morning EST.

      I have had CVS for 11 years.

    • jackie00198
      jackie00198 pet48859

      Posted

      I think some of the best research here in the states may be occurring at Stanford, and ls led by Ron Davis. His son, Whitney, has severe ME/CFS. They are shown in "Unrest."

    • pet48859
      pet48859 jackie00198

      Posted

      Hi jackie. The work that  Ron Davies does sounds very promising, let’s pray  he is closer to a breakthrough. For his son & million’s of us. It’s obviously very close to his heart & is working very hard 🙏🏻

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.