I wanted to do this post about the very sad death of Jodi Bassett who was a long term sufferer with Severe ME. Probably Very Severe ME.
She died on 11th June 2016.
She was just 40.
She had suffered from Severe ME since she was 19.
She created an amazing and comprehensive website called The Hummingbirds Foundation For ME.
http://www.hfme.org.
To help others.
I think this was mainly done from her bed as she was so ill and disabled by her ME.
To quote from her website, its purpose was :
” Fighting for recognition of ME. And for patients to be awarded the same basic human rights as those with similar neurological diseases such as M.S. ”
I’ve only been able to read tiny bits of the site because of my own symptoms being very bad a lot of the time.
Jodi explained on the website
” I’m 100% housebound and 99.5% bedbound.
Yet like so many other ME sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members ” .
That sums it up really.
The almost impossible position that people with ME are in.
We have to fight so hard for anything.
But the exertion makes us even more ill.
Such a vicious circle.
I’ve given personal examples of this throughout my blog.
The news about Jodi’s death I read on twitter. Where I get most news.
There were many tweets about it on Twitter.
People were very saddened by the news.
In the meantime I wanted to help raise awareness.
And express my sadness for Jodi and so many others who have died.
R.I.P Jodi
Your Jaw Never Gets Tired 
Jun 19, 2016 @ 12:30:25
May I copy your memorial art work for. Jodi – to post on my FB page please?
Jun 19, 2016 @ 23:43:41
No problem. But it’s not actually mine anyway. I just saw it on twitter and saved and re-used the picture. Maybe I should have asked for the ok to use it in my blog – but didn’t think. And I can’t remember who tweeted it now.
Jun 29, 2016 @ 08:18:09
With respect, this is disrespectful to Jodi and her family. I would love us to move towards a practice of waiting to see something come out from the family and/or the deceased’s organisations, like HFME, before simply repeating hot gossip about someone’s death and accepting it simply because others have also repeated it. And the problem with leaving up something which Jodi’s family and her organisation have not said to be true, until you hear a correction, is that in the meantime, more people may repeat it. (Which is what has happened.)
I am one of those at HFME and while we have not been able to update the website, we have updating the HFME Facebook page, and requested people making such statements to delete them. But it was very hard, needing to do this in the first week of her death, while we were barely up to discussing it, and the funeral was still happening.
In my opinion, it is better to make more general statements about the problems of dealing with the combination of M.E. and cancer, than assertions about individuals, because while they are likely to be correct as general patterns, they aren’t always with individuals. I don’t know what treatment Jodi was doing, but she was getting treatment. Sadly, it did not cure the cancer, and the combination of the cancer and M.E. was too much for her.
Jun 29, 2016 @ 13:49:38
Yes, you are quite right in what you say.
And I sincerely apologise for any distress caused.
The comments on Twitter that were being widely circulated, I’m thought said they were taken from Jodi’s Facebook page. Or from Hfme’s page.
(I don’t use Facebook myself – even Twitter is a big struggle most of the time. Or any internet or email use.)
But that is no excuse I can see.
I guess I just jumped in to wanting to raise awareness too quickly. But lesson learned.
I deeply apologise for distress caused to the family.
Anne Dean
Jun 29, 2016 @ 14:38:33
2nd part of reply :
If some of what I wrote sounded a bit casual – I’m really sorry. I didn’t mean it to. But on reading it back now – I can see that it maybe did.
I’ve amended the post a wee bit now and added a “see comments” note to 2 areas.
But I’m wondering if I should actually just delete the whole post ?
I’m struggling today, so I will leave it on just now. Overnight anyway.
Jun 29, 2016 @ 15:46:09
Thanks Anne, I am sure waiting overnight won’t make any difference now 🙂
Jul 15, 2016 @ 11:58:04
Have now amended this blog post. As you were right in what you said. And the last thing I would want to do is cause even more distress to the family. And I’m really sorry if I did that. I probably jumped in too quick with trying to raise awareness.
I’ve been slower amending this than I would have liked. I’d actually have liked to type a better post. But unfortunately I just can’t manage that right now with all my ME symptoms.
Anne
Jul 15, 2016 @ 11:59:09
Have now amended this blog post. As you were right in what you said. And the last thing I would want to do is cause even more distress to the family. And I’m really sorry if I did that. I probably jumped in too quick with trying to raise awareness.
I’ve been slower amending this than I would have liked. I’d actually have liked to type a better post. But unfortunately I just can’t manage that right now with all my ME symptoms.
Anne