Take part in our Severe M.E. Symposium from home

[Min]

I have permission to post this email that a severely affected person has sent AfME :

I would like to know where the Myalgic Encephalomyelitis experts are? Where are the carers for those with severe ME. Why haven't you set up a skype program so those who are Severe can be seen - or maybe even heard if all the noise was eliminated. I would like to see a patient spokesperson with fair share of time to speak. There should be a patient spokes person on every board being represented here. All you have managed to do here is to sit the favoured people in the room and talk around the needs of people with ME.

... I don't appreciate the way patients are being treated now so putting the power heads in one room who already agree with their own protocol speaks loud and clear to me. What you've managed to do is hold a tea party so everyone can laugh about how those afflicted with ME can have their diagnoses changed to the bogus CFS, BDS or whatever name you want to give it...

(There is absolutely no reason why those who pay their subscriptions cannot be full members with voting rights. What are they afraid would happen? I am a member of the 25% Group for the severely affected and we have full membership and postal votes)

 

[Sleepyblondie]

me too, I find it too difficult to get beyond Action for ME's participation in the PACE Trial. particularly their advice that led to the only objective form of measurement being dropped. PACE is keeping treament fo myalgic encephalomyelitis in the UK in the stone age.

Yes, this is probably one of the biggest things they could do

 

[Sleepyblondie]

Then maybe together we can suggest that any and all advocacy agencies for ME drop any positive reference to CBT/GET as it is NOT treating any symptoms of ME. If someone with ME is truly not coping well and has no-one to talk to about it they can be offered the option of CBT through their GP/PCP who has been properly taught that the ME is biological and is not what is amenable to CBT.

Yes, yes, yes. And the GP must know that this is not a 'cure' but a coping mechanism that he should offer to anyone with a chronic illness who is having difficulty coping

 

[Sleepyblondie]

This seems a really good idea and solution.

Yes. Yes

 

[Sleepyblondie]

I don't know either. When I clicked the link they had on that page to go to their discussion forum (under the bit saying to email your opinion) my computer tells me that AFME might be trying to steal my information - i don't know why it's coming up with that warning page blocking me!

Yes, it did that to me, too. But I emailed them anyway.

 

[Sleepyblondie]

Are you serious AfME? You really think the severely affected will somehow be helped by scientists who push NLP?

Many of us were pushed into severe disability by graded exercise. The last thing we need is yet more psychobabble.

Who were their subjects? People with 'fatigue' or people with ICC diagnosis? How severe were their symptoms? Oh, it makes me so cross. Do some research on people with fatigue and then say it relates to ME. And were too poorly to go there and make our voices heard. I will email them again with my concerns about research that doesn't use people with ICC diagnosis and doesn't state the severity of their condition.

 

[Bob]

7 November 2014
Our CEO Sonya Chowdhury reflects on those most severely affected by M.E. in her latest blog:
www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-those-most-severely-affected

 

[Snowdrop]

I would like to take this as a sign that SC is listening. I am, like many others very skittish. Cautiously hopeful is the best I can muster when faced with past and continued performance of powerful groups/people who hold our lives in their hands.

I understand that not having more clear and precise diagnostic tools is difficult all around. I am certain I disagree that severe ME is different from mild/moderate. I think there are many mild/moderate misdiagnoses not as in they are a different sub-type but the fatigue vs ME confusion.
I even get confused trying to write what I think. The spectrum from mild to severe is hard to sort. Getting rid of fatigue patients in research will prove helpful because they may well benefit from CBT/GET (I don't know) but for sure even mild/moderate ME patients need to exercise extreme caution as they are already using up what energy they have trying to still live a sort of normal life.

 

[Min]

Here's a photo from their facebook page of someone AfME considers to have severe M.E. - dressed, hair washed and groomed, jewellery on, able to sit on the floor - if only this were the reality of severe M.E.

 

[Valentijn]

Ugh, she still doesn't get it. No one thinks severe ME and mild ME are a different disease (except for her, apparently). We think "chronic fatigue" and ME are different diseases!

ME patients can go from mild to severe while still experiencing the same basic symptoms - they simply become more extreme and/or are triggered more easily in severe cases. Whereas chronic fatigue patients lack PEM, and usually lack OI, immune dysfunction, etc etc, no matter how mild or severe their fatigue is.

Get the bloody "fatigue" out ME charities already.

 

[CantThink]

View attachment 8692 Here's a photo from their facebook page of someone AfME considers to have severe M.E. - dressed, hair washed and groomed, jewellery on, able to sit on the floor - if only this were the reality of severe M.E. View attachment 8692

We need to set up a 'this is what severe M.E. looks like'

 

[Esther12]

View attachment 8692 Here's a photo from their facebook page of someone AfME considers to have severe M.E. - dressed, hair washed and groomed, jewellery on, able to sit on the floor - if only this were the reality of severe M.E. View attachment 8692

I think AfME are rubbish in a lot of ways, but getting these sorts of photos right is almost impossible, and defining when someone moves from 35% to 25% most severe is pretty arbitrary too.

 

[Scarecrow]

View attachment 8692 Here's a photo from their facebook page of someone AfME considers to have severe M.E. - dressed, hair washed and groomed, jewellery on, able to sit on the floor - if only this were the reality of severe M.E. View attachment 8692

Got to look just that little bit sexy, otherwise no one would care.

It does look like someone's having a temporary and not very serious emotional crisis, doesn't it?

 

[Alison2]

I think AfME are rubbish in a lot of ways, but getting these sorts of photos right is almost impossible, and defining when someone moves from 35% to 25% most severe is pretty arbitrary too.

How about someone in bed for starters.

im having difficulty readinf/taking in /understanding sc 's comment..so much for understanding needs of severely / very severely affected

 

[Amused]

For those who are struggling to understand how to get the Livestream - best way is to go to Livestream itself, register as a new user (for free) www.livestream.com

And then follow the AFME link to their 'stream' channel which is found here http://new.livestream.com/accounts/5490858

Then press the button to 'follow'.

Then on the actual day, just login, hover over your login avatar and it'll show you who you're following, click on that, and you're in.

If you want to see how Livestream works, once registered, click on any of the current events - there's a screen with a play button, click it and you see it live, with on the left, a chat stream.

This stream of foster kittens is currently on 24/7 and a good way to familiarise yourself with how it works before the day. http://new.livestream.com/FosterKittenCuddleRoom/LittleDarlings

(I watch a lot of kittens growing up, with the sound down.)

 

[Amused]

The great thing about Livestream is (at least on the kitten cams and I assume on the AFME one too) that you can swop between Live and what's already been recorded/ broadcast.

So, if you start off with Live, then need a pause, you can pause it & pick up where you left off. Yes you'll fall behind compared to Live, but as someone with not much concentration span, I'm doing to try doing it this way....

Thankfully, all the videos will be on YouTube in due course, so I'll probably watch most of it then, after the event in my own time.

 

[CantThink]

How about someone in bed for starters.

I agree. I have photos of me looking poorly - am sure their members do too and there must be some that'd be willing to provide a photo for awareness/stock photo type purposes.

 

[wastwater]

In the uk fatigue is the strongest diagnosis the cfs centres offer.

 

[worldbackwards]

7 November 2014
Our CEO Sonya Chowdhury reflects on those most severely affected by M.E. in her latest blog:
www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-those-most-severely-affected

"Is this grouping (for want of a better word) a different illness from the CFS or CFS/M.E. or M.E. that others are diagnosed with, who are not bedbound, who can maybe work at some level but at a cost of no social life and every weekend in bed?

Probably."

What absolute twaddle. I became severely affected because I didn't manage my illness properly when I was less ill, and research has shown this to be true for the majority of severely affected patients; I did not suddenly contract a different illness on the way down.

I'm now improving, to the point where I'm kind of straddling the borderline between moderate and severe. Is my illness subtly changing to a new one before my very eyes? I think not.

Where do they get these people from?

 

[CantThink]

I'm now improving, to the point where I'm kind of straddling the borderline between moderate and severe. Is my illness subtly changing to a new one before my very eyes? I think not.

She's assuming that M.E./one disease in one person cannot be either progressive, or greatly vary within the ability/severity spectrum. I believe this to be an erroneous assumption.

I've been from 20% to 60% and back again with stops at different ability levels along the way... maybe several times in my disease journey.

I agree with you. In my case also, finding myself completely crashed seems to follow a period of not managing the illness well, and as someone else mentioned the other day, eventually the body can't keep it up anymore.

This is partly compounded by other people expecting more of me when I am functioning more, as well as my own desire to make the most of any ability increase/feeling a bit better. The underlying disease process is always there... It never goes away.

In my situation I have noticed that there does seem to be a general decline/progression that seems to have started to occur about 10 years ago. As this happened I also started to add on more health problems in addition to the M.E.

I'm still optimistic that I might be able to get back up to the lighter side of moderately affected.

What AfME's CEO misses by assuming this illness cannot vastly fluctuate and focusing on that, is the difference between misdiagnosed chronic fatigue patients, versus true M.E. patients (as was discussed before in this thread). It is the latter that skews research and public perception of M.E. IMHO.