If Only

[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?

[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.

[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.

[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.)

[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 ........

[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...

[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.

[OhSleeperAwake]

why does the mea always showcase patients as if they have a depression, with sad music etc. its almost geeky? as a M.E patient i find it miss leading, especially after now we have descovered xmrv. w dont need to try perswade people its not in our heads.

[xIxlovexhimx4xeverx]

Thank you so much for this! Before I saw this I was trying to pretend I wasn't ill because it seemed so ridiculous but now I see that other people feel the same way I feel and ask the same things I've often asked. It's made me realise that it's not just me out there and thank you so much for that!!

[FreeBritain1]

Don't risk being (easilly) criminalised and do see your G.P. please. I picked something up in Parliament/House of Lords about some changes to the regulations in respect of people undergoing chemo. and also for people with M.E. but I'm not aware of what those changes may be. Does anyone here have this information please?

[FreeBritain1]

Well my M.E. has 'changed'. I'm trying to recover from a massive flare up. I got Tramadol from the call out doctor (useless at that level of pain but quite good tonight :-)). My best G.P. is on long term sick, the next one I may be able to talk to I can't see until a week on Thurs. So I've put myself on a course of steroids that I was given for emergencies (you know if there's an earth quake and one cannot move?) by a close, trusted friend of mine. I mean it's absolutely ridiculous isn't it?

[FreeBritain1]

UK You need to see your MP at his surgery right now, to stop the 'Right to Control' regulations. The laws are already passed and mostly in place. Get some help if you need to, but you must go and ask them to research the parliamentary library for the experts opinions (including yours, charities and organisations) and to be aware of the legal agreement people will be made to sign if they happen to be awarded a small amount of cash (with dictations for its use), i.e. zero freedom.

[H4NDCRAFTED]

Also tbh I find this advert way too fluffy and just reinforces the weak minded 'helper' arty type that some heath pros seem to have of people with M.E.

If I didn't have M.E I really wouldn't be interested in this. Show some kid getting clapped in when getting to school or some other discriminative behavior that some kids have suffered due to this illness.

Show a family getting angry at you bc your asleep

I'm grateful something has been put together but but seems a little cheesy and fluffy to me.

[razmataz13drums]

@H4NDCRAFTED i completely agree. im 16 and its a real problem at school. you just look lazy and like you cant be bothered which makes people frustrated and angry at you. Its not their fault they dont understand. But please its not my fault either! My mum and dad get stressed which just adds to it. and i feel bad cos i feel like im letting them down which just adds to the whole gloom :/ yay lol

[H4NDCRAFTED]

This is extemely rare but for those that don't think M.E has the potential to kill you...

Google this...

First official UK death from chronic fatigue syndrome

[FreeBritain1]

You know, I can't stop this evil and dangerous legislation on my own!

You may have M.E. but get your fingers out will you?

It's VERY DANGEROUS legislation. You will have NO freedom, cash, control, nothing!

[FreeBritain1]

*New links are available to stop the very dangerous 'Right to Control' legislation.*

[Pacerjames]

Wow, this video couldn't have come at a better time. I know I was thinking about you for a reason. May the hand of God lead us to His glory. God bless you sister, I often find myself less connected when I'm feeling better, sometimes I wonder if feeling bad is more of a blessing then feeling nothing at all. Healing for us all and let's stay connected even in our healing. Love you sister and your videos are always a blessing to tune into. God bless your heart and may you find healing.

Brother

[FreeBritain1]

Please, everyone, a handful of people continue to work very hard to protect the sick from the 'Right to Control' legislation which must NOT make it through parliament. It is very dangerous legislation and the sick are not able to sustain it. People will die, which may include 'you'.

It is essential that you all respond to the EQUALITY AND HUMAN RIGHTS COMMISSION in their CALL FOR EVIDENCE.

[FreeBritain1]

I was at the rather wonderful & efficient Bangor Hospital recently (with a friend). My M.E. was bad that day, so I had to pop a couple of steroids (secret stash for emergencies) to keep going & look after her in her crisis. I mentioned M.E. to various medics, out of interest. The response was no longer disparaging. I noted rather, a completely 'blank' response - at this time. I was struggling to walk & breath. I looked longingly at the wheel chairs passing me by. Surreal. I smiled, like we do.

[FreeBritain1]

The Equality and Human Rights Commission is calling for evidence, if a gvmnt body has frightened you or let you down. This will include DWP. It's very important that we respond. Friends, family and associates of those affected may also respond, please.

[FreeBritain1]

Superb, thanks.

~God bless all courageous warriors of M.E.~

Please make sure you respond to the Equality and Human Rights Commission's call for evidence as it's very important that the 'Right to Control' legislation does not make it through parliament.

[vikkkilouise]

whats the song used?

[PostHuman2113]

I classify those Docs as mentally ill and worth of the death penalty..

[GilvanGouveaMerola]

Wonderful !!!!

[yesevil360]

sorry, I should have said does anyone know where I can get a copy/recording? it's a beautiful song, for a very worthy video.

[yesevil360]

hi. does anyone know what song this is??

[LUCAX651]

I have bad M,E and Fibromyalgia too. I love this video and song so much!!.

If we all show our friends and family who dont believe us or think our illness is all in the mind this video, then in just 3 minutes 23 seconds they will see what our M.E life/hell is all about!!. Thanks for posting. Luca x

[roosws]

Who has made this song? (And who sings it?)

I cannot find the lyric of this song..

[AshTheFallenAngel]

it says right at the end of the video O__o

[AJT4FISH]

Hey, i was just told that it is very high that i have ME.

i'm 14 and i don't know how to react. I don't think i will be able to tell anyone outside family because i spoke to someone about and they told of the high death rates in ME.

i couldnt belive it, please tell me its not true! its probably just me being irrational but i think i just need someone to tell me it will be alright for a change...

[imjustpeachy]

You can't die from ME! Whoever told you that is getting it mixed up with something else.

[ImHollieWood]

@imjustpeachy

You can but its VERY rare.

M.E can make you so so weak you are hospitalised and unable to eat and your organs unable to function.

[LUCAX651]

@ImHollieWood Well said and very true. Sopphia mirza died from M E and it is on her death cert. Hope you are as well as possible, hugs luca

[doggeanie]

the sad thing is that y ou can die from M.E. You just need to do a search on the internet to find a list of those who have died, and not from suicide.

[H4NDCRAFTED]

@imjustpeachy Tell that to The girl that had M.E written as cause of death on her certificate last year. She was sectioned as they treated it as a mental illness and didn't get the care she needed and died. First M.E recorded death in the UK.

It is very rare but if you not allowed to rest your organs will just give up in the end.

[AshTheFallenAngel]

dont worry, you are not alone. i am 14 and i have had PVFS for 7 months. you just have to keep fighting. :)

[bertie8jsa]

@AshTheFallenAngel OMG same :) 14, had SOMETHING since May last year, although we're still working out if it's PVFS or ME or... I don't know.

Just gotta keep on going.

[karenkitto1]

My 12 year old daughter was finally diagnosed with ME last January after a year of her going down hill. From January to the end of June 2009 she did not attend school and was in bed all of the time. I had her at the hospital every other day and the doctors most days. I found a website called The Lightning Process which is a three day course to get your life back. My daughter is back at school full time.Have a look at the website and see what you think. Look at it with an open mind. x

[kimwillis81]

This video is quite dangerous. It implies that life with ME/CFS is completely hopeless. That simply is not true. I have CFS, and for a long time I felt like the life had been knocked out of me. There have been some v. dark days. But I AM getting better. It's slow, there are setbacks, and it ain't easy. But I have some great moments too; I celebrate those. And I still love my life - it is a gift. The one thing recovery relies on is hope. Have hope, and please believe me - people do improve.

[luminescentfeeling]

With respect Kim. At least 1 in 4 people, are bed ridden/housebound.

There is no funding for bio-medical research in the UK, and the disease is called 'disgusting' by the very man who owns the funding into the disease!

If one has been ill for 5, 10, 15, 30 years and lives in terrible pain, with heart problems and inability to even get out your front door then 'CFS' becomes a life sentence, and thus it IS completely hopeless.

92-98% of people with ME never return to former health levels.

[omgitsyoubaby]

92-98% of people with ME never return to former health levels - just the sort of psychological boost i needed.

I've had ME for about 6 years now, but only got diagnosed with it about a year ago as i assumed i was just unfit and unwell til i couldnt take no more. Its hard, it's annoying at the best of times, but I WILL make it, regardless of what you or anyone else says.

[LUCAX651]

@luminescentfeeling Well said and It is nice to see someone sticking up for others like you and I .I am at the stage you describe above, in terrible pain and very sick indeed. luca x

[redjane100]

Hi, I'm 15 and have been ill for months. I've just been told the likely hood is that i have ME. I'm not sure what to think of this news and how to tell friends and family. Do you have any advice for me?

Thank you

[ImHollieWood]

Hey! Im the same age and have M.E too. If your from the UK and looking for support, AYME are a brilliant charity for sufferers under 25 with heaps of info and messege boards. Google it or give me a messege ;) x

[LUCAX651]

@ImHollieWood Hollie is right!!, AYME is fantastic and the help and support available is great too. And the free magazine ''cheers'' is always nice to get in the post too. luca x

[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.

[FreeBritain1]

@Bluebottle83 I disagree. This video is 'superb' and perfectly relevant for the needs of those who are seriously ill at this time and who are facing a gross escalation in hate crime that is born of an ignornace. An ignorance for which they should be thankful.

[livingfaith17]

I think people who has ME is usually very frustated because they are always very tired and very few people shows them understanding.. But we are together in this, and let us dont fall down in misery and unhappiness, but let us rejoice in what we can learn of this difficult circumstances..

In Christ ......

[livingfaith17]

Hello! I am just 18 years old, and I have suffered of ME in many years.. I have a big problem, and that is that my family does not understand how sick I am...Pleasseeee pray for me! I really need your prayers.. I thank God for all the circumstances which he sends in my way Rom.8: 28 is a big help for me..God bless you all!!<3

[LottyB29]

I pray to the Lord for His strength, when we feel weak and helpless to remember His love, and be trusting in Him to lift us up.

I have watched and experienced many sufferers recently making their first steps on recovery from ME. There is always hope. God chooses His time for each of us. Reach out for what you believe is true. Surround yourself with love and holding for every part of you, and let Him guide you, listen to Him, towards the healing you need.

[livingfaith17]

thank you so much for good words... =))

[Adasusy1]

I hope you're not using this forum as recruiting ground for your faith. Faith ought to be a personal matter. Private. When you say 'God chooses His time for each of us' you are speaking for other people. I am one of those people. But I do not have a faith. So you cannot speak for me. It is not logical. I listen. I'm not hearing anything. If you want to help people, fine. If people come to you and ask you about your faith, then great, share your faith. But leave it at that eh? Let us atheists be.

[moopy83]

@godwhatcanihave Your sick

[fogggygyrl]

Thank you so much for making this video. Well done!

[CoCoChAn3LiB3aN]

This is very moving, if only everybody could just watch it once. It would make our lives so much easier. Ive suffered for 10 years, it doesnt get any easier when you are faced with ignorant ppl. Thank You x

[h3rjp]

Very moving. thank you

[Hankypankie666]

A very expressive and truthful account of what it is like as we seam to all agree.

The more the populus is aware of this horrific illness the more there will be acceptance. Myself have only been suffering from ME in the past year or so and i really know how hard it can be.x

[patsmithsmithpat]

Beautifully said Dr Dolan. We need to educate people and support each other. I am sorry for your suffering. Thank you for helping us ALL, no matter what it is called.

[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:)

[robvalue]

It's a great video. It sums up the way people who see me every day don't think I look ill, so they think I am fine. ME has taken many things from me, including my job and my active life, but I know I am very fortunate compared to some people who are affected far worse. If anyone doesn't understand what ME is like they should watch this video.

[gillbatty]

Hello robvalue... i think im like you. Im not afffected like some people, and ive managed to stay at a job where i can work 3hrs 3 times a week. Many times even that is hard, but i look well so my collegues are a bit skeptical. I cant blame them, but i wish they could be in my body just for a day to see how hard it is and how ill i can feel xx

[robvalue]

Thanks gillbatty, I'm glad to hear you are able to stay at work part time, that's great. I tried reduction of hours and a phased return but they made me worse and I had to leave entirely, but I am making slow progress and some sort of return to work is looking more possible now. Hope you continue to cope well and get better.

[DrFrankyDolan]

This is a beautiful video! Thank you for sharing it with the world. I am also making videos (and a documentary) about CFS as well. We must be forthcoming and honest about our disease of Chronic Fatigue. Again, thank you!

Health and love to us all,

Dr Franky Dolan

[littleredcorvette83]

I have severe ME and its certainly not CFS! CFS label has opened doors to inaccurate diagnoses and confusion in the medical profession. This can lead to wrong treatment which can worsen the condition. By calling it CFS undermines the disease and has led to the biochemical research in ME to greatly recede. Psychiatry has opinionated over this disease too long and downgraded this horrific illness by calling it CFS.

CFS is just merely ONE of the many symptoms experienced by ME sufferers!

[DrFrankyDolan]

Believe me, I understand. I am housebound and suffering everyday of my life because of it. I am constantly doing my best to educate people and help our community. I am located in America and most people here do not even know the title of M.E. 'Chronic Fatigue' is a TREMENDOUS understatement. Though, in order to properly educate people, we must start with some common point of reference.

Most importantly, we need to be kind and supportive of each other. I wish you happiness and good health.

[littleredcorvette83]

I assure you it was not meant to attack. As you say though CFS is an understatement! So why use it? This name change was made by physiatrists opinions. So I think the first thing we should be doing is rejecting this name and also making ppl aware GET and GBP are only ways to learn coping mechanisms and pacing(which as u probs know most learn this on there own)So now 11 million has been wasted on these UK government programs and zero on biochemical research. So it inpertive we have to say ME :)

[DrFrankyDolan]

One last thing; we are in this together, no matter what it is called. We all experience it together, as one. Even this video uses both the titles of "M.E" and "CFS" because it takes time to transition, especially when educating people about an uncomfortable subject matter.

I am with you my friend. Sending hope...

[littleredcorvette83]

I think it does matter what its called as u have agreed with me it is very damaging. The WHO has proved this was not accetable by classing only ME and Charities should be setting example. As CFS renaming has caused the most damage to our illness to getting a cure. The only way for ppl to learn about it is to say no the word which started most of the stigma in the first place. Using words so loosely and continually changing between the two or three names for one illness would confuse ppl.

[littleredcorvette83]

But im only saying this out of wanting the better for us.. and peace out hope Dr dolan you and everyone has awesome holidays and can enjoy it with healthy good days :)

[littleredcorvette83]

I am a kind person and im also passionate about what I believe in. So please do not think Im trying to abate what youre going through. I too wish u all the support and good health. Its also good to discuss our options so we all learn from each other and our experiences.

[DrFrankyDolan]

Thank you for your kindness. I believe that you are a kind person, just frustrated as we all are. There is so much confusion and sadness with this disease. It's a challenge because when I say M.E. then I have to go into a big explanation on TOP of already explaining CFS. It is hard enough getting people to listen in the first place. So, sometimes I say CFS and sometimes ME, sometimes CFIDS. We are all just doing the best we can. Thank you for your kind response. Truly, I wish you love and health

[debbie4marsh]

Thanks for the video. As an M.E. sufferer for the last 3 years i can tell you that it is all true. I'm bed bound some days, house bound most days and always suffering from extreme tiredness and pain in my arms and shoulders. if i over do things i then cannot not sleep at all because my brain decides it must keep going and won't stop. My doctor has just put me on anti-depressants to see if they help. Now i feel drugged as well as knackered and in pain. I hope a cure or acceptance comes soon.