What Do You Want From Your Local M.E., C.F.S. Group?

[MeSci]

Trained specialists who will visit and give all the appropriate support needed - including help with benefits and form filling.

Are there any such creatures? I thought that they were mythical. For that reason I would be very wary of 'speakers'. Who would select them, and on what basis?

 

[MeSci]

If someone brings food to share and it's not to your diet/ taste, don't eat it and don't expect people to be accomodate for everything although we have rules about no/ minimal fragrance.

This is easier said than done, because most artificial perfumes are not personal scents but chemical cocktails added to most laundry products, other cleaning products and toiletries, and sometimes given off by furnishing fabrics and even electrical equipment. Most non-sensitives can often not even smell them when I am being badly affected. Then there are the dreadful 'air fresheners', not only in buildings but also in cars.

 

[MeSci]

We have 7 ME Community Support Groups across Cornwall all run independently and by patients or by others.

Where are they, Firestormm?

 

[peggy-sue]

I am not aware of any trained specialists, no, MeSci, but that doesn't mean we don't need them!
The folk who work for the Macmillan and Marie Curie cancer care charities are properly trained to deal wih all aspects of living with cancer, it's treatment, it's effects, the emotional well-being and with the financial side of benefits and those associated problems. There's even free counselling, with no long waiting lists, for the families of cancer sufferers.

There are 2 charities who do this for cancer sufferers in the uk alone.

This is exactly the sort of support that PWME need. (I think.)

 

[MeSci]

I am not aware of any trained specialists, no, MeSci, but that doesn't mean we don't need them!
The folk who work for the Macmillan and Marie Curie cancer care charities are properly trained to deal wih all aspects of living with cancer, it's treatment, it's effects, the emotional well-being and with the financial side of benefits and those associated problems. There's even free counselling, with no long waiting lists, for the families of cancer sufferers.

There are 2 charities who do this for cancer sufferers in the uk alone.

This is exactly the sort of support that PWME need. (I think.)

For myself I don't need counselling, or emotional support other than having some interaction with fellow-sufferers, and there is no effective treatment on offer in the UK so that's out too. I've worked out pacing for myself with the help of forums, and have also worked out what dietary changes I needed to make after reading research papers.

Because there is so much controversy and disagreement over ME treatment, I would guess that there is a vanishingly-small pool of people with the expertise to advise people correctly. As with this forum, I think that members would have more to learn from each other.

I would welcome help with practical issues though, such as help in the home, help with transport (e.g. to shops and hospitals), and could previously have done with advice on sources of financial help, home-based work, etc. I would guess that things like this would be generally welcomed.

 

[peggy-sue]

I needed counselling when my Dad was dying from cancer. My gp put me on an 18 month waiting list.
I had a whole load of practical issues to deal with as I had welfare power of attorney for him, I was very ill with ME - I couldn't make decisions about anything - even taking a day off visiting him so I'd not get too ill and have to cancel 3 visits
I'm not saying counselling is needed for PWME - I was simply trying to explain the vast areas that these charities DO cover - for Cancer sufferers and their families.

Obviously, what I think we need is folk who can cover the areas PWME need help with.

And if that's driving us somewhere, so we can do a little something, then take us home again, that's what we need.
If it's help with practical issues around the house, that should be incorporated.

I've worked out pacing and supplements for myself too - but it took several years and major crashes to do it.

 

[Firestormm]

Where are they, Firestormm?

Don't say I never give you anything

 

[MeSci]

Don't say I never give you anything

Thanks, Firestormm. All too far away really. Liskeard is about 15 miles, but there don't seem to be any convenient buses. I see that some of them are run by NHS people. I wonder why someone from Rethink is running the Wadebridge one - that's an organisation for mental illness.

Shame I don't live near Penzance or Camborne as their contacts are involved with conservation - an issue close to my heart. Best friend lives near there too.

 

[Firestormm]

Thanks, Firestormm. All too far away really. Liskeard is about 15 miles, but there don't seem to be any convenient buses. I see that some of them are run by NHS people. I wonder why someone from Rethink is running the Wadebridge one - that's an organisation for mental illness.

Shame I don't live near Penzance or Camborne as their contacts are involved with conservation - an issue close to my heart. Best friend lives near there too.

I wouldn't get your knickers in a knot about Rethink. They just own the venue and Marianne just coordinates is all. It's a self-run group by the patients with ME and Fibro from what I recall. Only went the once myself - it's my home town but not my personal cup of horlicks

 

[WillowJ]

one of the people who has come to my local support group is a local SSI attorney who has taken ME/CFS and fibro cases (I couldn't attend but I heard tell). this is the kind of expert who does exist.

OTOH, when I was less ill I went to a group where the "expert" they brought in from the big hospital didn't know the difference between FM and CFS and promoted exercise for everyone.
many group members seemed to think this was fine.

 

[Sushi]

one of the people who has come to my local support group is a local SSI attorney who has taken ME/CFS and fibro cases (I couldn't attend but I heard tell). this is the kind of expert who does exist.

OTOH, when I was less ill I went to a group where the "expert" they brought in from the big hospital didn't know the difference between FM and CFS and promoted exercise for everyone.
many group members seemed to think this was fine.

One of the most interesting speakers we had was a navy pilot who taught us the moves they use to avoid passing out when under the stress of GG's -- and we are always under the stress of GG's!

But not the big GG's just plain old gravity. Same principle though. He also demonstrated a G suit that blows up to put pressure on certain areas to prevent fainting.

 

[Misfit Toy]

There have been threads and at least one blog on here that seem to suggest that there is a higher incidence of Asperger's in the ME population than in the general population. I myself seem to be borderline Aspie. There are quite a few aspects of the conditions that overlap, and also possible causal factors, notably leaky gut.

Why wouldn't a 97-year old woman have ME? And I think we are generally agreed here that ME is a lot more than tiredness.

Hey MeSci, thank you so much for correcting me. As usual what I say is put under a magnifying glass and misconstrued. She was 97, had emphysema, a bypass surgery and COPD. Maybe that's why I felt that she didn't have CFS. Maybe that's why we all felt that she didn't have CFS. The whole 10 of us. At 97, you are going to be for the most part be ill in some way or another, but it doesn't mean that you have CFS. It's usually old age...ya know? In fact, her makeup and slightly blue hair looked almost too good for a 97 year old. She stumped us all.

As far as aspergers, I am sure many have several illnesses with CFS. But, I stick to my feeling and what I said, that many come in with several illnesses and it's hard to tell what is what and if CFS is really the major thing, which for so many of us, it is.

And no, I didn't feel like explaining all of that previously because her age alone explained enough. People at 97 have health issues. That's a given and a no brainier.

This place is supposed to be nice. We are all sick and yet so many slam others. Say things to make us defend ourselves. We are all supposed to be in this together, but on here...it's anything but.

 

[rosie26]

Just carry on as usual The Spitfire, I think we all understand you need to express like the rest of us, don't take anything to heart, I'm sure MeSci wouldn't mean to hurt you in any way. Keep on keeping on xx

 

[MeSci]

Hey MeSci, thank you so much for correcting me. As usual what I say is put under a magnifying glass and misconstrued. She was 97, had emphysema, a bypass surgery and COPD. Maybe that's why I felt that she didn't have CFS. Maybe that's why we all felt that she didn't have CFS. The whole 10 of us. At 97, you are going to be for the most part be ill in some way or another, but it doesn't mean that you have CFS. It's usually old age...ya know? In fact, her makeup and slightly blue hair looked almost too good for a 97 year old. She stumped us all.

As far as aspergers, I am sure many have several illnesses with CFS. But, I stick to my feeling and what I said, that many come in with several illnesses and it's hard to tell what is what and if CFS is really the major thing, which for so many of us, it is.

And no, I didn't feel like explaining all of that previously because her age alone explained enough. People at 97 have health issues. That's a given and a no brainier.

This place is supposed to be nice. We are all sick and yet so many slam others. Say things to make us defend ourselves. We are all supposed to be in this together, but on here...it's anything but.

I wasn't slamming anyone, Spitfire, just expressing opinions and pointing a couple of things out. I'm sorry you took it that way.

 

[MeSci]

One of the most interesting speakers we had was a navy pilot who taught us the moves they use to avoid passing out when under the stress of GG's -- and we are always under the stress of GG's!

But not the big GG's just plain old gravity. Same principle though. He also demonstrated a G suit that blows up to put pressure on certain areas to prevent fainting.

Under the stress of horses? That's the only kind of GGs I have heard of!

 

[golden]

I wouldnt be suprised if 'old age' was now being diagnosed as CFS - ! - I mean, everything else is.

In my own mind, I have settled on Hydes definition of M.E. I think the elderly may very well get M.E.

But there are over 9 different criteria for C.F.S. - and some say since this is an diagnosed/missed illness, CFS it is not.

As we get older , we potentially are slower to heal and the elderly are discriminated against routinely by not bothering to hunt for a cause.

Given this , it may well be nutrient deficiency, thyroid problems etc....
(if its not ME - or ME /CFS )

The support groups can not possibly cater for such a hodge podge of people.

 

[MeSci]

I wouldnt be suprised if 'old age' was now being diagnosed as CFS - ! - I mean, everything else is.

In my own mind, I have settled on Hydes definition of M.E. I think the elderly may very well get M.E.

But there are over 9 different criteria for C.F.S. - and some say since this is an diagnosed/missed illness, CFS it is not.

As we get older , we potentially are slower to heal and the elderly are discriminated against routinely by not bothering to hunt for a cause.

Given this , it may well be nutrient deficiency, thyroid problems etc....
(if its not ME - or ME /CFS )

The support groups can not possibly cater for such a hodge podge of people.

Maybe we are thinking of different types of support group here? I was thinking more about an informal group of patients who could meet locally and, ideally, virtually, for mutual support, rather than anything official or run by any kind of 'experts'. That's what my local FM group was/is.

But yes, there is a lot of discrimination against older people, whose health problems are often dismissed as being due to 'old age'. A similar situation exists for people with mental health problems or 'learning difficulties' (which might include Asperger's, although such people are often academically gifted). People with such problems, at least in the UK, die considerably younger than those without such problems, often because it is harder for them to get diagnosis and treatment for physical illnesses.

Sorry - straying off-topic a bit here - I do tend to ramble!

 

[golden]

And those disabled people , whose health is ignored and so they die earlier...there was a massive additional factor in that group which was if you were a disabled woman , even less likely to get a proper diagnosis.

Re . M.E . group support ...

its difficult for me to know as I have never really received proper support.

But support to me would equal usefulness. And what I have most needed in the past is :

1) help with forms plus advocate for benefit process
2)help with checking my diagnosis and advocate at Doctors
3)knowledge of different criteria plus access to Hyde links
4)then a place to meet that does not exaserbate M.E. symptoms

a) chemical, electrical free with ideally place to put feet up.

Refreshments suitable for those with M.E.

I would have liked to have been told about POTS , have them find and teach G.Ps if necessary so people could go to a knowledgeable G.P.



And then would come fun stuff After survival is taken care of

Like I said , mine are busy excluding you if you cant drink caffiene or eat cakes or go to the pub or shop....or do aerobics or swimming...

But basically there isnt that much knowledge of M.E . in M.E. groups and there isnt empathy as such .