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Social media and ME/CFS

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

Hi

I was just wondering. Beside this forum, do any sufferers of M.E use any other social media?

If so I was wondering which ones and why you use them? Or any other online stuff?

Best wishes

LL

15 Replies
Energylz
Posts: 16602
(@energylz)
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Joined: 20 years ago

Well, that's a bit of an odd question. I have no doubt that ME/CFS sufferers use other social media, such as Facebook, Twitter, LinkedIn etc. Why shouldn't they?

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Crowan
Posts: 3429
(@crowan)
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Joined: 14 years ago

There are both ME and CFS groups on Facebook.

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

Well, that's a bit of an odd question. I have no doubt that ME/CFS sufferers use other social media, such as Facebook, Twitter, LinkedIn etc. Why shouldn't they?

Yes sorry, let me rephrase the question: do people with M.E/CFS use SPECIFIC media or sites to facilitate certain aspects of the condition, such as moderating energy levels, connecting to avoid isolation and so on? I.e certain media for certain aspects of the condition.

I didn't mean in a generic sense, sorry.

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

There are both ME and CFS groups on Facebook.

Do you think these groups attract a lot of members who then use them frequently to give AND get information? Or are there other particular aspects of Facebook that people engage for?

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Energylz
Posts: 16602
(@energylz)
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Joined: 20 years ago

Can we ask why you're asking. It sounds like market research.

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

I'm a psychologist putting together a grant proposal for funding to look at this issue.

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

Hello again
Can any readers provide an insight to my query, above?
ANYTHING at all would be useful.

Thanks.

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Posts: 1838
(@jnani)
Noble Member
Joined: 14 years ago

Hello again
Can any readers provide an insight to my query, above?
ANYTHING at all would be useful.

Thanks.

Would be more useful to do a serach on Facebook for such groups. If anyone knew about it , the folks here would have answered. There are all kinds of forums, just about every topic under sun. Mr Google?

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

Would be more useful to do a serach on Facebook for such groups. If anyone knew about it , the folks here would have answered. There are all kinds of forums, just about every topic under sun. Mr Google?

Hi
Thanks for the reply.
I was hoping for one or two first person comments about what people have found useful, not useful, insights etc. Anything I could then follow up.
If you are an ME sufferer, do you use a particulate media, primarily for a purpose related to ME?

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Posts: 1838
(@jnani)
Noble Member
Joined: 14 years ago

I

Hi
Thanks for the reply.
I was hoping for one or two first person comments about what people have found useful, not useful, insights etc. Anything I could then follow up.
If you are an ME sufferer, do you use a particulate media, primarily for a purpose related to ME?

i am not an ME sufferer, but I have helped folks with it. So it is not first person perspective as a patient but as a person who helped them get over it
I am pretty sure they don't need to find support online forums etc
Does this help you in any way?

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Posts: 19
Topic starter
(@luckyluke)
Active Member
Joined: 18 years ago

I

i am not an ME sufferer, but I have helped folks with it. So it is not first person perspective as a patient but as a person who helped them get over it
I am pretty sure they don't need to find support online forums etc
Does this help you in any way?

Yes it does a little. Thank you.

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Tashanie
Posts: 1924
(@tashanie)
Noble Member
Joined: 14 years ago

I

i am not an ME sufferer, but I have helped folks with it. So it is not first person perspective as a patient but as a person who helped them get over it
I am pretty sure they don't need to find support online forums etc
Does this help you in any way?

Thats a very sweeping statement jnani. You cannot know that your clients did not get support from on-line forums. I would guess almost every chronic disease has a self help forum/website/ facebook group/twitter account. If I was a sufferer I would google support groups for my particular ailment.

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Posts: 1838
(@jnani)
Noble Member
Joined: 14 years ago

Thats a very sweeping statement jnani. You cannot know that your clients did not get support from on-line forums. I would guess almost every chronic disease has a self help forum/website/ facebook group/twitter account. If I was a sufferer I would google support groups for my particular ailment.

How did you figure this one out Tashanie?

You are surmising if You were a sufferer, You would google....etc
If I say I am pretty sure, that's exactly what I mean...You are free to conceptualize, that's ok
The reason I am sure is-I don't work with clients unless they are happy to stop all other stuff they do to help themselves.
Another sweeping one for you?

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Tashanie
Posts: 1924
(@tashanie)
Noble Member
Joined: 14 years ago

How did you figure this one out Tashanie?

You are surmising if You were a sufferer, You would google....etc
If I say I am pretty sure, that's exactly what I mean...You are free to conceptualize, that's ok
The reason I am sure is-I don't work with clients unless they are happy to stop all other stuff they do to help themselves.
Another sweeping one for you?

Yes a little. I see my therapies as empowering people so they can help themselves but I am not an expert on every aspect . So if someone I am working with wanted to try something they found out about from a support group, I don;t feel I have the knowledge to say they shouldn't try it....unless I know it specifically interfered with whatever therapy I was doing. So I could envisage using mindfulness with an ME sufferer. That wouldn't mean they should not also use yoga ,or have a different therapy from someone else. - say hot stone massage or acupuncture . With something like ME I can imagien more than one therapy might be needed so I certainly wouldn't feel I had the right to say 'no' Because I see empowerment as an important aspect of my therapies , in a way if they are looking beyond what I do that is a good and positive sign.

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Posts: 1838
(@jnani)
Noble Member
Joined: 14 years ago

Yes a little. I see my therapies as empowering people so they can help themselves but I am not an expert on every aspect . So if someone I am working with wanted to try something they found out about from a support group, I don;t feel I have the knowledge to say they shouldn't try it....unless I know it specifically interfered with whatever therapy I was doing. So I could envisage using mindfulness with an ME sufferer. That wouldn't mean they should not also use yoga ,or have a different therapy from someone else. - say hot stone massage or acupuncture . With something like ME I can imagien more than one therapy might be needed so I certainly wouldn't feel I had the right to say 'no' Because I see empowerment as an important aspect of my therapies , in a way if they are looking beyond what I do that is a good and positive sign.

I understand if you don't get it, because What happens here, is not a therapy, second, it is not a technique, third it is not about empowerment.
It is about being.
When someone gets over ME, is it hard to see that they feel their own power or not...? Clearly, how can you feel powerless and conquer something so to spaek...
So empowerment is not an agenda here....it happens
So you are doing what you are doing.

It s not only different approach it is a whole different gestalt. The two cannot be compared but I do understand. we just compare compare, compare all our lives

You do what you get to do....no more to it!
Hope it makes some sense...if not, what more can be said?

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