ME sufferer

Contact the ME Society?
meassociation.org.uk/
They are well thought of, and I believe supportive
Good luck

Thank you but they don't have the funds apparently.

Are ME sufferers ever going to get proper help? A dear friend of mine suffered from ME and it was a real eye opener for me as I met several of his friends from his local ME support group.

Touche Maybe. My poor SIL has been sick now for 2.5 years which has impacted family life to. My daughter has to do everything working full time and ferrying round the kids to their activities. He feels guilty but can't do much. His brother doesn't take it seriously, but he doesn't see what his close family see. It breaks your heart when my grandson said he wants he old dad back and granddaughter told teachers at school she worries her daddy is going to die.

We’ve got a charitable organisation in Wales called Care and Repair, who advise on finding funding sources for adaptations for elderly and disabled people, as well as carrying out work themselves. I don’t know if it exists elsewhere in the UK, but it’s a brilliant organisation so it would be worth checking if it operates where you live.

Thank you Casdon

Have you tried going via the GP? To see if a letter of support would help raise the priority with the council.

I, too, think a letter from your GP is a good idea. If it doesn't work perhaps your MP might have some influence.

There is no real support for ME sufferers. I have had it for over 10 years. I have actually sat alone crying in the middle of the night in despair.

And PIP is designed in such a way that getting financial help is extremely difficult.

I hope your SiL gets his wet room soon.

Thank you for your ideas. I did suggest their MP but they have an appt with a councillor so she is doing that first. The suggestion of a letter from the doctor sounds a good one, I will pass it on.

nadateturbe can you pinpoint what brought on the condition? They wonder if an operation he had about a year previously on his septum had anything to do with it.

I have been told it can be caused by physical or emotional stress on the body.
I had a marriage breakup, family death and car accident in quick succession. I can't pinpoint what caused it.
We have a very helpful councillor too. I hope he/she can help.

A letter of referral from my ( disabled) sons specialist for carer support services was what helped us get financial support for respite care when I developed CFS/ME, so a letter from a professional may assist. In our case we were referred for a carers assessment- ( it took nearly a year to get as far as respite once a month) but it may be different now. Perhaps your DD could get a carers assessment if such things still exist and apply to carers of adults? The wet room would be adaption. However everything takes months- as everything has to wait for 'panels' to approve each step!
I am hopeful that research into long covid may help understand and fund support for ME also. Mine was set off by a severe bout of pneumonia - but frankly I think I got ill because I was already very over busy!

I am hopeful that research into long covid may help understand and fund support for ME also.

I would like to believe that, but I'm sure our government will find a way out. The implications of acknowledging that M.E needs as much support are too great.

nadateturbe

^I am hopeful that research into long covid may help understand and fund support for ME also.^

I would like to believe that, but I'm sure our government will find a way out. The implications of acknowledging that M.E needs as much support are too great.

I hoped for that too, but I can’t see it happening. It doesn’t help that it was called yuppie flu at first and I still think people don’t take it seriously. The people I’ve met that suffer from it have all been hard working and incredibly motivated. I do think that when people suffer from a virus of any kind they need to convalesce for a while afterwards and not push themselves eg it takes ages to get over glandular fever.

I have had to finance all the alterations to my bungalow myself. My health went down hill 34 years ago. Only this year was I diagnosed and it's rare and was born with it. It's only because I moved 100 miles from where I lived 3 years ago I finally got see the right neurologist who did genetic blood tests in 2020 only got the results this year due to Covid . So at the age of 64 finally have a label plus found out last year I was born with a hole near my heart.

Have been turned down for any benefits for 34 years as they said no name no claim. Now I have a name still nothing. I am disabled but apparently not enough for the PIP people or MRN so with the help of the Brain Charity and the solicitor they use are having to go to tribunal.

I sorry overthehill your son in law isn't getting the help he needs. The benefits system is not helping those it should. What made me so mad the other day Ulkraine nationals entering this country can apply for various benefits including PIP.

I am not well off as my husband died in 2004 aged 47 what he left is long gone so live on some inheritance from my mom. Which hopefully will last until I get my state pension in 2 years.

People in this country in real needed aren't getting the help . About time the powers that be put people who work and have paid into the country get the help they need and stop giving money away to those that haven't.

Overthehill just had a thought has your son in law been in contact with the falls unit every council has one. Because of his ME is at high risk of falls and they can supply equipment that could help him .

Whiff shocking and disgusting. I hope your tribunal is successful. The majority of appeals are.
My brother was so ill my sister had to appear for him at tribunal. He died before the backdated payments came through.
Another friend, a hardworking social worker for twenty years, developed M E in 2000, no help, and had to actually sell his wedding ring .
Of course we need to help others, but those who have worked and contributed for years shouldn't have to beg for help when they need it.

Thank you Whiff I will pass on your comment about 'falls'.

Overthehill also community nurses and district nurses can supply equipment. Has he been in touch with the occupation therapy department may have to go via GP for that.

Nadateturde thank you. When my husband was terminal in October 2003 because he was given 4 months to 2 years to live we where refused DLA and carers allowance on the grounds he had 2 years. Our McMillan nurse when mad and filled in the forms. Said she and her colleagues had to do for every patient that had been given years. My husband died just under the 4 months he was given.

Trouble is all the benefits forms for any disability physical or mental are written by and assessed by able bodied people. They have no idea what life is like for others. Life is not yes or no. It's not black and white it's shades of grey for disabled and able bodied people. Common sense does not exist in government departments. Plus the fact they make judgements without ever seeing people and the people who made the rules are not medical .

What happened to your brother is disgusting and grossly unfair. But unfortunately it's become the norm .

We are supposed to be a caring country doesn't apply to government departments but it's been like this for decades unfortunately.