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Would you sign this petition please.

(20 Posts)
kittylester Sat 12-May-18 16:09:58

Isobel is someone DS1 has known since they started school together aged 4.

She has suffered from ME for the past 11 years. She writes a great blog which I can't link to currently but will try to do properly later.

As you probably know, DS1 had a stroke 11 years ago. He has made a brilliant recovery but the same can't be said for Isobel.

ME petition.

kittylester Sat 12-May-18 16:15:09

My phone insists she is called Isobel - her name is Isabel.

Isabel's blog if anyone would like to read it.

blog

dustyangel Sat 12-May-18 16:17:36

Willingly signed Kitty. I have Fibromyalgia and am having an exhausted day today, so know what it feels like.

HAZBEEN Sat 12-May-18 16:23:34

Signed it Kitty. I am disabled with osteoarthritis and sympathise with anyone effected by a chronic condition.

Cherrytree59 Sat 12-May-18 17:19:55

Signed smile

NfkDumpling Sat 12-May-18 17:23:27

Signed.

Squiffy Sat 12-May-18 17:23:34

Thanks Kitty, duly signed.

NfkDumpling Sat 12-May-18 17:24:05

326 signatures to go!

Squiffy Sat 12-May-18 17:33:27

Kitty I've just read part of Isabel's blog - "What it's like to have severe ME". It's such a clever description and so accurate.

Moocow Sat 12-May-18 17:33:28

Off to sign, having known someone for years afflicted by ME happy to add my signature.

allsortsofbags Sat 12-May-18 17:35:49

Signed

janeainsworth Sat 12-May-18 17:45:28

kitty
We call on every government in the world to formally recognize ME and sufficiently fund research at the levels needed to treat and, ultimately, find a cure
Sorry to be awkward, but CFS/ME is already recognised by the NHS
www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Whether the NHS offers any effective treatment is another question.
But just demanding that governments allocate resources is a simplistic request.
Funding for medical research doesn’t just come from ‘the government’. It comes from drug companies and also comes out of funding for research within universities as opposed to clinical departments. There is overlap between the two as well.
Then of course charities fund a great deal of research.
Given that budgets are not unlimited, if more funding for research into ME was allocated it would be at the expense of research into other conditions.
Would it be fair if the government allocated fewer resources to research into cancer, for example, because a very active charity raises millions for that cause?

I think that what is needed, rather than a petition which in my view won’t achieve anything because the funding issue is so complex, and the allocations are decided by scientists and clinicians, is a campaign to raise awareness in the condition in the hope of stimulating interest from potential researchers who might then apply pressure for more resources.

Greenfinch Sat 12-May-18 18:24:22

Signed.My DiL had it as a teenager.She was unable to attend school for a while and had to be carried up to bed by her brothers.She was in a wheelchair to be her sister's bridesmaid and the outlook was very bleak.However she did recover and went on to do a degree and have three children but she lost out on her teenage years.She is one of the lucky ones.

Agus Sat 12-May-18 18:38:45

Signed along with the hope that Isabel makes a full recovery.

Bellanonna Sat 12-May-18 18:55:49

Just signed. Happy to.

Bathsheba Sat 12-May-18 19:28:00

Signed - I have known several people with ME over the last few years and it is terrible to witness, so debilitating.

valeriej43 Sun 13-May-18 13:48:07

Signed with pleasure,and shared to facebook

Minerva Sun 13-May-18 16:01:08

I have signed and wish Isabel well.

I know a young woman who about 10 years ago went to see her doctor about a few debilitating symptoms such as Interstitial Cystitis, weariness and panic attacks. The GP rubbished her concerns and she broke down in tears and as she left his room he shouted after her “and it’s not ME (she hadn’t even imagined that it was) because IT DOESNT EXIST”. This in front of a student doctor.
He retired not long afterwards and may I be forgiven for hoping that he eventually found himself battling with a baffling chronic illness of his own.

FarNorth Sun 13-May-18 16:27:43

I have a relative who has ME and is (I hope) making a gradual recovery.
The main thing that helped was pacing - simply doing only what she felt able to do, rather than following advice from doctors to make efforts to push herself further.

Unfortunately, children with ME are often unable to use pacing as education authorities insist on them attending school.

There may be no quick cure, of the type we usually hope for nowadays. The need to adjust to the illness needs to be respected.

I have signed, as any recognition of ME is welcome.

Moocow Sun 13-May-18 17:15:20

Don't know if many have seen this article on the BBC website www.bbc.co.uk/news/newsbeat-44094429 Just thought I'd share.