First Cure-Me Webinar

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Building Bridges: Community strategies and research insights from the CureME team and ME/CFS study participants

Thank you to everyone who joined out first interactive webinar, bringing researchers and participants together, which we held this February with guest speaker Dr Jaqueline Cliff from Brunel University.

Dr Cliff gave a presentation on Dr Sook’s recent publication “Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, explaining the hypothesis of the study and the initial results in an accessible way.

The CureME team and the participants to learned much from each other as they interacted online following the talk. It gave us a clearer idea of the needs and priorities of people with ME/CFS, which is invaluable as we discuss research direction and how we can make study participation more ME/CFS friendly.

We would like to thank the participants again for sharing their thoughts and for the very informative discussions.

Please watch the recording and feel free to post something in the comments box if you would like to share your thoughts on the questions in the interaction sections, or if you have any questions for Dr Cliff.

We look forward to seeing you for the next webinar. 

.We look forward to your feedback and to the next webinar. 

Comments

5 responses to “First Cure-Me Webinar”

  1. Eleanor Avatar
    Eleanor

    1. Most people, including doctors and nurses etc still think the disease doesn’t exist or is psychosomatic.
    2. Hell. (nearly fifty years, Severe)
    3. Pacing VERY carefully, LDN and LDA, and using a Limitation of Consent on my medical records to make clear I DO NOT CONSENT to be seen or treated by anyone who regards the disease as psychological and/or who isn’t following NICE Guideline ME/CFS 2021. This needs strengthening to protect patients, particularly those who are Very Severe, from abuse by the NHS – people are dying because it can be ignored by rogue doctors so out of date they still don’t accept the disease in Very Severe form exists.
    4. PEM is a SAFETY issue, PACING is a SAFETY measure. PEM is harmful and strongly associated with long term deterioration. We need to use safety language talking about it and prioritise getting healthcare and charities to put our safety first. Pacing isn’t a lifestyle choice, it is to help limit deterioration as far as possible, and can even bring modest improvements. We need more research to back this even though we have known for decades in the ME community this is how the disease works, and even though it’s very difficult to do it ethically. Thank you for all your hard work.

    Reply
  2. Susan Thompson Avatar
    Susan Thompson

    1. That it’s a multi system disease not a psychosomatic condition
    2. Life-stealing
    3. Breathing. I use interoception to rate my symptoms/pain on a scale so I know how mild or severe they are (1=terrible – 10=No pain), then I calm my nervous system through slow breathing exercises (5 counts in, 10 hold, 10 counts out slowly) or through visualising images of balance (yes, that works), and then I do a small amount of activity. Finally, i stop and use interoception to note the impact of the activity. This enables me to know whether my symptoms are getting worse or staying the same and if they’re the same, I do a bit more, or I stop. This enables me to keep or build my physical capacity safelly without overdoing it. Over time my capacity for activity stays higher (until I do something stupid like move house which set my ME/CFS back years).
    4. Don’t wait for the medical profession to help you. You can’t cure this but there are things you can do that will help (like with any illness). Take it dead serious from the get go or your exhaustion will get worse. Prioritise avoiding stressors. Do small pleasurable things when you can. Regulate your nervous system (learn about this, there’s loads online). Get therapy for any adverse childhood experiences you had as that will help you regulate yourself better. Eat well and regularly. Breathing exercises everyday, especially at bedtime will help you go to sleep and over time will release any muscle armouring. Symptom focussing makes symptoms feel worse, so distract yourself from that focus when you can. Counting breathing also cuts out those thoughts. Stop the perfectionism and people pleasing and be kind to yourself instead. Pray these researchers find a cure.

    Reply
  3. Jane Avatar
    Jane

    From an epidemiology point of view is it possible to work out symptomatology links with perhaps medical history & co morbidities? (I think my logic is to ask is ME/CFS similar to EDS in that their are different types genetically or perhaps just at a cellular level for ME/CFS) Thus would different types of ME/CFS (eg 13 different types of EDS, but different people have different triggers for ME/CFS the range is unclear) would benefit from different symptom management styles? (My trigger PVFS, others is EDS, others is stress, others post cancer, overs is post vaccine etc)

    Reply
    1. admin Avatar
      admin

      Thank you for this very interesting point. Research shows that the fatigue patterns of people with ME/CFS are heterogeneous and that patients can be divided into meaningful subgroups, not only by disease severity and triggers. The post-infectious ME/CFS sub-type is is of course particularly relevant, and COVID-19 highlighted that. I fully agree there are many sub-types, which will require different treatment approaches. This is an area of research that needs further development. We are currently looking into correlations of clinical symptoms and immunological parameters in our UK MECFS Biobank cohort.

      We hope that we have been able to answer your question and that you enjoyed the webinar and look forward to seeing you at future webinars.

      Best wishes,
      CureME -team

      Reply
  4. Madeleine Avatar
    Madeleine

    Really interesting as I’ve experienced an ongoing reaction with regards to viral loads/reactivation and thought it was EBV reactivating since last covid infection as had pustules on arm that I thought could be a type of HHV-6. I’ve had pomphloyx and strep throat type symptoms too the last two times which are worsening and also possible MCAS.

    I originally developed M.E. from an EBV infection. I’ll be sure to check back over time, thank you : )

    Reply

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