If Only

A video about ME/CFS from the ME Association.

Category:

Education

Tags:

• ME
• CFS
• Myalgic
• Encephalopathy
• Chronic
• Fatigue
• Syndrome

[Bluebottle83]

The MEA do a wonderful job, but this video is a fluffy bunny approach to a serious neurological illness from which few recover, and from which some have died, and from which a quarter of all sufferers are permanently house or bed bound.

Few recover because the government have given all the research & treatment funding to the psychiatric profession who insist that this debilitating physical illness is 'an abnormal illness belief' . GET & CBT make us worse, not better.

[littleredcorvette83]

Sorry but I was simply viewing my opinions. CFS does matter, to me it greatly affected my treatment. It was only taken seriously after a consultant insisted I had ME not CFS and suddenly the ball got rolling I started to get better pain meds and got a wheelchair so I could leave bed/house. So from experience in UK hospitals and GPs it matters a lot. Still to this day its sad for us that theres alot of docs out there that class CFS as a mental illness. I just hope theres a cure soon for us all:)

[mrbobsmum]

@xenbay Thank you for your response. I have found a PPI policy I took out a few years ago, I have requested a claim form but will have to wait and see. Will cover me for a year if it pays out. Here's hoping. I wish you well too.

[xenbay]

@mrbobsmum Perhaps you should take out some life and medical insurance if you haven't already. I don't know where you would stand with regards to CFS being accepted by insurance company as a recognised illness though, but many policies are quite flexible and will cover for most illnesses that prevent you working. It might be a worth considering taking a 5 year policy to protect your income until the mortgage is paid as the premiums are very low I have found.

[xenbay]

I'm fairly sure I have this condition as I have all of the symptoms which started quite suddenly about 3 years ago. I haven't had a diagnosis or even seen a doctor about it yet. I get good days when I can feel relatively normal and do exercise like jogging or cycling, and other days where I can hardly move.. the good days are rare. I take stimulants to keep my energy levels up and find Kratom (a natural plant supplement) is good for relieving many of the symptoms and acts as a natural AD.

[mrbobsmum]

I have been recently been diagnosed with ME and I feel so angry with myself and this bl**dy awful condition. I can have good days and others when I just don't want to exist anymore. I want to return to work but just getting up in the morning is something I can't always cope with. my income is diminished and with only four years to go on my 25 year mortgage I am scared that I will also lose my home.I feel lazy but when I do go out or push myself I pay for days after. Where do I go from here?

[alehanx]

it really annoys me when i get ppl asking me y i cant do things and saying im just lazy im 14 and have had it for nearly 2 years and people at school are always saying y do i always look so pale and laughing and calling me lazy .. so annoying coz they dont understand

[LuDouglas]

@rasputin37 The help is there if you look. I know the meeting of many obstacles on the way doesn't make it seem that way, but it IS there. You don't have to do this alone and your life could be so much easier. Show people these messages if you have to. I'm so lucky that my husband always understands and is there for me, and the fact that your wife chooses when she does and doesn't understand really upset me. I can't even imagine how much that must hurt. She needs to learn about it. Good luck x

[LuDouglas]

@rasputin37 I'm so sorry to hear that. I know just how difficult it can be to make people listen and believe you. But there is help out there to make your life so much easier. Take your wife to the doctor with you, let him/her help you explain it. Show people this video and the ME Association website (ring their advice line as well as they can help you with everything you mentioned). Get a letter from your doctor for work and get help dealing with them (that appalled me, by the way.)

[angelonduty100]

@rasputin37 i'm so sorry you are going thu that.....'it' is the non-believing that can just brake our hearts, and "IF" we alow ourself to 'listen' to to THEIR, "misunderstanding"....we 'can' loose our 'hope' !

( I lost my family,daught,friends...it can "HURT...DEEPLY" BUT don't give up, never.!)

THIS IS A REAL HORRIBLR DISEASE !!!! And sometimes I think, those who deal w/ these diseases, are the "strongest & are " HERO"S"

just find ''your' circle of me/cf circle friends ..Blessing's...

[rasputin37]

just spent a year being diagnosed with CFS/ME Fibromyalgia ,Chronic Pain and Cervical Spondylosis and i'm still working as i am the only breadwinner home life is stressfull due to family not understanding(even tho i collapsed at my parents) wifes only understanding when she wants to be ,works taking the piss and throwing work at me i'm on reduced hours altho you wouldnt know it,am sooo fed up with people not believing me ........

[BritishSnail]

As someone with M.E. for 8 years, I like this video. It's message in the current climate is excellent. It turns out that the Right to Control Regs are supposed to be regarding only aids and services, so why in chapter one it goes straight in to discuss 'work' I do not know. Keeping letter from Cabinet on file for the future. MP broke his promise to get truth into Parliament. Have letter of reassurance for people with M.E. from Chris Grayling that is not worth the paper it is written on.