- Messages
- 31
- Location
- UK
This first time posting on this forum so hello to everyone and I hope you are all having as good a day as possible.
I live in a small town in England and last year joined a local ME support group which had just been set up, with accompanying Facebook group. I have had ME since age 11, am now 35 and have never been to a support group before, but having relocated a couple of years ago I lacked local friends and was mostly joining for that reason.
The first meet up I went to I met the founder and leader of the group, a woman in her late twenties who said she had had ME since childhood but said she had managed to make giant leaps in recovery through many things including aloe vera and exercise. She has been through hospital outpatient treatment for ME on the NHS, so had GET and CBT as well. She now goes on 10K runs, attends multiple gym classes each week, works full time, runs a business in her spare time, has an active social life but considers herself to still have ME. She told me she wanted to be an inspiration to others with ME, so they can make themselves better too. She said her turning point for making herself better was seeing other people with ME in wheelchairs and saying they had clearly given up.
I was pretty disappointed and offended by all this, the implication being I and others just hadn't tried hard enough to fix my health. I decided to go to one more meet up to see if I could make contact with other members of the group who I might better relate to, but the group leader (will call her K from now on) was there dominating the conversation, saying going on benefits was never an option for her as she had bills to pay etc, implying anyone with ME who did receive benefits were somehow letting themselves down. At this meet I was encouraged to join a gym and go on dog walks with K - this is all completely beyond me.
After this I decided to not go again, and felt concerned for those who were in the group, potentially about to push themselves into horrible relapses due to the influence of K. Also, a few days later I received a private message from her saying could she come and sell Aloe Vera products in my living room to my friends and family(!)
I stayed a member of this group on Facebook mostly to occasionally respond to posts about practical matters like questions about benefits or coping when severely ill as the leader ignores this kind of post. She likes or occasionally replies to posts which are about "positivity". She has recently opened the Facebook group out so anyone can join saying it is all about positivity.
This group is advertised in the ME Association and I am concerned that it could be very damaging to PWME who are perhaps recently diagnosed and more easily swayed into really pushing themselves physically. Those with more experience and knowledge of ME I hope would just ignore K and her advice.
Does anyone know if the ME Association have any requirements groups must meet before being advertised in their magazine? Or had a similar experience with a support group?
I live in a small town in England and last year joined a local ME support group which had just been set up, with accompanying Facebook group. I have had ME since age 11, am now 35 and have never been to a support group before, but having relocated a couple of years ago I lacked local friends and was mostly joining for that reason.
The first meet up I went to I met the founder and leader of the group, a woman in her late twenties who said she had had ME since childhood but said she had managed to make giant leaps in recovery through many things including aloe vera and exercise. She has been through hospital outpatient treatment for ME on the NHS, so had GET and CBT as well. She now goes on 10K runs, attends multiple gym classes each week, works full time, runs a business in her spare time, has an active social life but considers herself to still have ME. She told me she wanted to be an inspiration to others with ME, so they can make themselves better too. She said her turning point for making herself better was seeing other people with ME in wheelchairs and saying they had clearly given up.
I was pretty disappointed and offended by all this, the implication being I and others just hadn't tried hard enough to fix my health. I decided to go to one more meet up to see if I could make contact with other members of the group who I might better relate to, but the group leader (will call her K from now on) was there dominating the conversation, saying going on benefits was never an option for her as she had bills to pay etc, implying anyone with ME who did receive benefits were somehow letting themselves down. At this meet I was encouraged to join a gym and go on dog walks with K - this is all completely beyond me.
After this I decided to not go again, and felt concerned for those who were in the group, potentially about to push themselves into horrible relapses due to the influence of K. Also, a few days later I received a private message from her saying could she come and sell Aloe Vera products in my living room to my friends and family(!)
I stayed a member of this group on Facebook mostly to occasionally respond to posts about practical matters like questions about benefits or coping when severely ill as the leader ignores this kind of post. She likes or occasionally replies to posts which are about "positivity". She has recently opened the Facebook group out so anyone can join saying it is all about positivity.
This group is advertised in the ME Association and I am concerned that it could be very damaging to PWME who are perhaps recently diagnosed and more easily swayed into really pushing themselves physically. Those with more experience and knowledge of ME I hope would just ignore K and her advice.
Does anyone know if the ME Association have any requirements groups must meet before being advertised in their magazine? Or had a similar experience with a support group?