NEW! Living w/ ME Support Group

Categories: Actions

Do you have ME and want to connect and share with others from around the world facing similar issues? Join us every other Sunday for a time of open sharing and discussion. Help us be a supportive and inclusive global community for each other. Our goal is to draws strength from each others’ experiences and empowers each other to fight to end to this health inequality.

Each week we will discuss a different topic. For example, we kicked off our first meeting by discussing the issue of “coming out” to family and friends about having ME.

If you have an idea of a topic for a future meeting write to us at livingwithME@meaction.net.

Be sure to also check out our Events Calendar where you can find a full listing of upcoming meetings.


Categories: Actions

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6 comments on “NEW! Living w/ ME Support Group
  1. Warren says:

    I often feel hurt by others when accused of being lazy or of hiding behind an illness. People seem to compare me with there own abilities and this really hurts. It’s like I’ve got 10% energy and I’m expected to function the same. On the surface I often achieve little but have way surpassed my limits and it tears me apart seeing others achieve so much more with so little effort. Sometimes I just hate the world. I’m sick of appeasing people through fear and shame just to prove I’m not lazy. Sometimes I just don’t want to live.

    1. Warren says:

      I’ve never spoken with anyone with ME before but feel isolated like I’m the only one in the world. I hope that can change now, I hope to gain the understanding and empathy that has been absent for so long.

      1. Hi Warren, Thanks for being honest and reaching out. I hope you’ll join us for a future support group call. You can find them listed here: https://my.meaction.net/calendars/meaction-global-events-calendar

        It is really hard, but there are a lot of us out there just like you. #MEAction wants to help you connect to others to gain support from an online community and to rally together to fight for health equality for people with ME. Have you joined our FB group yet? https://www.facebook.com/groups/211058135999671/

  2. Daisy says:

    hi i am a 40 yr old single mum very busy personal trainer and yoga instructor – I recently had a cold and then bronchitis and was then diagnosed with CFS. I am now going to see a neurologist. I have found that fresh juice beetroot,lemon and apple has helped with morning energy. I also take bee pollen and ginseng. But….. the hard bit is explaining to people the crippling weight I feel descend on my head and body after doing things. There doesn’t seem to be a pattern yet. I also find working on my laptop very tiring, does anyone else find that? It makes me feel nauseous. I currently lie in the UK but am having to plan to relocate to be near family so looking at seattle in the US and Malaga in Spain. I don’t know what to do or where would be best place given my limited capabilities currently. How has anyone else coped or made decisions? I am having to rehome animals and shut down existing life and its very challenging on my own. Any advice or contacts or ideas would be great help. Best wishes to you all!! XXX

    1. Hi Daisy,

      Have you joined the Living with ME Facebook group yet? I think posting your introduction and question there will receive the most feedback.

      Join here: https://www.facebook.com/groups/211058135999671/

    2. Johanna Elik says:

      Hello Daisy: So sorry to hear how much you are struggling. Thanks for the suggestions for morning energy. I live in Virginia. There are no specialists here. I moved back to VA from Montana two years ago due to no medical support and only dismissive and rude attitudes from drs. Stanford University in San Palo, California does treat ME/CFS, but it is self pay…8 thousand dollars out of pocket costs.

      I found the climate in Montana better than the heat/humidity in Virginia. Am thinking of moving back. There are so many on-going challenges that it does affect ability to make decisions due to feelings of being over-whelmed by this illness. If you have family help that would lighten your burden…as long as they accept and have knowledge of the complexities of this illness.

      Read and research in addition to joining the FB groups for support.

      Wish you well in making your re-location decision. Please stay in touch and continue ask for help.xoxoxox

      Johanna

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