Upset at SA ME/CFS society again at what is being posted there

taniaaust1

Senior Member
Messages
13,020
Likes
15,403
Location
Sth Australia
https://www.sacfs.asn.au/

They are posting things at their website which adds to the misconceptions around ME/CFS. Im refering to that international news article there posted on the Saturday 27 July 2019 about another so called ME/CFS person who is doing marathon things.

I wish they would use far better judgement at what they put on their website as the biggest advocates for those who have severe ME in my state.. or possibly in Australia and they are doing harm by the website. (how many there have seen that article and now think their ME/CFS friend or relative just needs to try harder? or the person who is newly diagnosed who just thinks he/she needs to push themselves even harder now. I already have that problem with my sister who is sick or keeps trying to push her way out of the illness but has been sick now for 5 years, thank God she has not ended up completely bedbound yet).

It's an damaging article which should have no place on a ME/CFS website which is supposed to support people with "ME/CFS".

Im really regreting for paying my membership fees a couple of weeks back to the society and giving them a donation. (I wish I could ask for my money back at this point.. they are hindering people learning correctly about ME with what they are posting).

Posting bad articles on our illness does not help ME to become a better understood illness. I've had to call an ambulance this week as Im not coping with the ME/CFS due to other peoples views on it which stop me from getting the support I NEED as the general public tend to think of it as being a mild illness .. while they post articles which support that general public view of someone doing physically something when even most healthies cant manage to do and will just have them believing that we are not that ill.

At hospital the other day a doctor (I was ambulanced to hospital this week again due to being in such a state over my care needs going unmet), just told me I needed to "try harder" and I also copped a story of his so called "ME/CFS doctor friend" who manages to live a full life and works at the hospital and if he can be fine and live a normal life, so should I be able to.

urgh.. articles posted on our states ME/CFS website just further lead to this general public impression which stops me from being able to receive the help I need. Doing more damage to those who have this illness than help.

If the society is going to post things like that they should be putting disclaimers on them explaining why this is not typical ME/CFS and why that person may have been wrongly diagnosed.

Water was her refuge as a child, the only way of making the pain of her ME disappear. A bucket, a stream, a river or the sea, it didn't matter - so long as there was water
How about a disclaimer on the article that water is not a cure for ME symptoms if you are going to post such a misleading article at a world recognised advocacy website.

Swimming the English Channel is a challenge most would flinch at. French, now 41, did it in 2012. Two years later she became the first person to swim the 26 miles from Cornwall to the Isles of Scilly.
Attempting the Oceans Seven, a marathon swimming challenge consisting of seven channel swims, is lonely. For hours at a time, sometimes up to 24, it's stroke after stroke, breath after breath, pounding through the murky seas.
A lot of people are going to read that article and go "oh a person with ME/CFS swimming marathons"

But French has battled, and conquered, challenges all her life. At the age of 10 she was struck down with a then-mystery illness that would plague her adolescence.

"I woke up one day and I couldn't get out of bed," she says. "It felt like molten lava had been poured through my veins."

Lengthy spells of these "slumps", sometimes lasting three months, marred French's teenage years - a period in which she lost faith in her body with self-harm and bulimia with anorexic episodes following.
ME does not have slumps which does last 3 months with the person being fine the rest of the time.. well not in full blown ME/CFS. The article says she had an eating disorder and serious psychological issues going on at same time. This person should not even have got a ME/CFS diagnoses given to her at that time. She certainly should not be being used as a ME/CFS poster person to be representing this illness.

"Floating was the one thing I could do," she says. "Floating in cool water actually took away the pain and the aches in my body. It was the one time when I was really ill that I felt better."
:rolleyes: oh yeah.. that's all we need to do to feel better when really ill.... just float. Float your way to recovery.

Swimming became French's saviour, and for a decade she was asymptomatic. That was until an "adrenal surge" during an encounter with a shark triggered her immune system, and since then she has not been "in perfect health".
ME is more than just about being a little less than having "perfect health".

But at last, she knows what is her trigger - "emotional, hormonal and psychological stress", something she now has the tools to cope with after ordaining as a Buddhist nun in Thailand and studying "intensive forms of meditation".
ME is not an illness which comes and goes depending on how stressed someone is. :eek: , if you have ME you will still have symptoms from it stressed or not stressed. Terrible misleading article.

After finding herself unexpectedly pregnant with son Dylan, who is 10 and has autism, French feared the "test" of being a single parent would make her ill again and so she knew she had to challenge herself to prove that she was well.

After swimming the English Channel - the final thing to tick off the bucket list she wrote when in a wheelchair all those years ago - she felt she hadn't yet reached her "edge", her absolute limit.
So what is being implied by that part? she's so serious with her ME/CFS to the point that she's in a wheelchair but can challenge herself and do more than just swimming the English channel? It's applying that people with severe ME who are in wheelchairs can swim the English channel. OMG get real.

During such channel swims, competitors are not allowed the touch the boat that accompanies them, and once they are in the water, not stop until they reach the other side.
At the time of French's Oceans Seven attempt, only six people had completed the challenge, though she was aiming to become the first to complete all seven swims in one year.

But after four, she quit. Not for a lack of ability to do it - she knew that she could complete the challenge - but because she realised she didn't need to do it.
Implies that those with ME can do anything at all as long as they dont quit trying.

"I had to make the decision of what I wanted to teach my kid. I'd taught him self-discipline and resilience,
umm so in other words we just need to have "disciple and resilence"

n just a couple of weeks' time, French will swim in a glacial lake within the Hintertux Glacier in Innsbruck, Austria - wearing only a bikini in 0.5C waters.
..............

As someone who has severe ME, I'm extremely upset to see an article such as this giving out wrong misconceptions about ME/CFS on our states website with no responsibly of our society to correct any misconceptions in the article they've posted.

OMG with them supporting things like that.. what hope do I have in getting anything I tell doctors and others important to my care needs across esp when people head to the local ME/CFS society website for info and to learn about the illness.

No wonder I'm given crap by doctors when I end up at the hospital.. I even had one tell me this week when I ended up there that he had no sympathy for me but would if I had been a mother trying to look after 5 children but said as I dont have anything like that going on I have no reason to be upset and that I'm completely responsible for the situation I'm in and of getting out of it (my house is a mess as I'm incapable of clearing it and other important care needs go unmeet as the general public AND health professions are not educated correctly in our illness .

The SA ME/CFS website s making thngs worst for me by helping mislead to people how the illness actually is. Are they actually reading what they are posting at the website? This is not the first time something this bad has been put there. Please please stop the harmful articles going onto the site.

Just cause an article is supposed to be about someone with ME/CFS it does not mean it is so.. and the society should know that most doctors do not understand the illness and people get wrongly labeled or not get a correct diagnoses all the time to know that not all articles should be being posted on the website which is supposed to be for those with this and educating people on the illness.

Im upset and dismayed about this... and the damage being done which ends up affecting me through others by things like this and Im sure Im not only one who is negatively affected by poor publicity on our illness. As a South Australian. I feel like my donation and membership to that society is going towards things which harm us now... so sorry I've supported them. We'd be better off having no ME/CFS society rather than having one doing this.

Thou Im a member there, I hardly look at their website due to articles such as this.. and I see last time I looked was when I'd just left hospital too and saw something similar which had been posted which just further upset me... same kind of situation. If one has a membership with somewhere, is it possible to cancel it?
 
Last edited:

Pearshaped

still looking for the Reset button
Messages
161
Likes
281
Location
Switzerland
medical community should finally be educated about "key-symptoms" in ME/CFS so that they can differentiate between ME or other ilnesses/conditions.
(hope some docs read this-you never know)
Once they know the difference it will prevent people with other problems getting misdiagnosed with ME.

Severely affected ppl have to suffer perhaps b/c of articles like this.
 

vision blue

Senior Member
Messages
222
Likes
209
Maybe a good reply to someone would be "hey- the reason this is a news story is becasue its such an anomoly! it's like writing a news story of a person with paraplegia who just suddenly got up and started walking. It makes the news because its so rare".

i get disbelief from evey corner no matter what i do or what others read it hink. or at least i did. i finally look sick now...but that reminds of reading when one of the tennis williams sisters was in the news for being diagnosed with sjogrens - yet was still abel to play competitive tennis (with tons of oral cortisone by the way which was less publicized) - gave everyone with non-anomolous sjogrens a bad name.