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August 8th - What is the one thing about suffering with severe ME that the world needs to know?

Legendrew submitted a new blog post:

August 8th - What is the one thing about suffering with severe ME that the world needs to know?

Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...

Long, lazy August afternoons. The sun is shining, the birds are singing, the garden growing, and the children are free from school. For many this time of year means holidays, family get-togethers, and a period of general relaxation.

However, for sufferers of severe ME, this time of year is rapidly becoming more and more a time for a united effort to get severe ME onto the radar of the general population.

The time has once again come for us to report upon the Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. Set up by the 25% ME Group in 2013, this annual event focuses upon the most seriously affected 25% of ME sufferers.

Last year, to mark the inaugural severe ME day, we looked at ME from a carer's perspective, mused upon the preventable loss this misunderstood disease can cause, and outlined what doctors and carers could and should be doing for those most severely affected. Perhaps most importantly, we outlined why this yearly event is so important for conveying information about ME and the neglected community of carers and patients this illness has left in its wake.

The 25% ME group are themselves marking the event with "The ME Cover Up!" The 25% ME group are asking for members to send them pictures of themselves covered by a sheet and displaying the Severe ME group slogan: "Medical Ignorance of ME Kills".

The covering of sheets signifies the invisible feeling that ME sufferers are often left with as a result of the negligent medical and media coverage of ME. Above all, the aims of both Severe ME Day and the big ME Cover Up is to raise awareness of the severity of ME to both the medical profession and the general public.

If you wish to send in your photo to support the hard work that the 25% ME Group and for their "Big ME Cover Up Event" there is still a little time left to send in your photos along with a short caption detailing how ME makes you feel invisible or ignored. You can do so by emailing your picture to enquiry@25megroup.org

This year, here at Phoenix Rising, we wanted to simplify our message and allow patients' voices to be heard above all else. With that in mind, we posed a simple question to patients that suffer the most from ME.

What is the one thing about suffering with severe ME that the world needs to know?
A simple question, but the response we received proved to be wide-ranging, thought-provoking, and all too often tragic. As always, the community here at Phoenix Rising delivered.

Some gave long, eloquent answers. Others opted for short, bittersweet answers, and others carried a clear sense of anger and frustration. We will hand over the remainder of this article to the patients so that their responses can take center stage.

(Names given are Phoenix Rising usernames unless actual names are given.)

Patient Responses ...
It leads to a loss of independence and leads to a life of a lot of uncertainty. I had worked for 10 years while ill, and am now trying to find my way in regards to supporting myself and applying for disability NOT via Social Security! My life is in limbo, but luckily I have had family to fall back onto to take me in.
~ GG

How lonely it is.
~ Sean

I think the worst things are losing your sense of identity, having to rely on others for basic help, but mostly not being able to produce energy on demand like the rest of the world and feeling resentful/jealous/fearful and emotions that you don't want to feel. You just want to be healthy and participate in life as you knew it, but you can't. There are so many more "Worst parts" that I don't really know where to even begin!
~ Gingergrrl43

That it is an excruciatingly painful living death.
~ Min

What I would like the world to know about living with severe ME/CFS is that it comes with a lot of losses. The one that has the greatest impact on me personally is the loss of my dignity.

Suffering from a severe form of a chronic, debilitating disease for decades comes with many losses such as physical functionality, social activities, friends and even family members. It is painful and totally life altering. For me, specifically, I mourn my dignity.

Other devastating diseases come with the worldwide understanding of how impactful the disease really is. For example, in my community, when a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero for being so strong, dealing with such devastation.

I will never have the chance to be heroic.

When I first fell off the social grid, I received some phone calls to see how I was doing. After hearing that I suffered from Chronic Fatigue Syndrome, those calls quickly dwindled down. This is because there is no understanding of the seriousness and devastation of this disease. The handful of people who still do call, tell me to go out because it’s a nice sunny day ... as if it is a choice that I can make. I have been advised countless times to go for counseling as if it is just a mood thing. As far as my community is concerned, I am perceived as one who has been in a deep depression for 11 years and has become a hermit by choice!

Even though I have been suffering physically for so long, it is this loss of dignity that has been the most painful for me.
~ Gabby: 59 year old wife, mother and grandmother. I have been ill and disabled from work with ME for 11 years, fluctuating between severely and moderately affected.

People need to know about LOSS ...

It's as if a pause button has been pushed and some-one has forgotten to re-start it. The lives we wanted to lead have been lost to us. Yet I have lost less than those who are severe.

They need to know about PAIN, and GRIEF, and the PAIN OF GRIEF, and the GRIEF OF PAIN.
For those who are severe, they are caught in an endless cycle from which there appears no escape.

And they need to know how to CARE - not by constantly talking about the illness, but by finding little ways to show caring. A card, a flower, an email or Tweet ... something that doesn't require much response but shows that the individual is not FORGOTTEN!
~ Keela Too, moderate ME/CFS

The message I would like people to hear is that this disease should be avoidable and curable. It isn't and it could happen to you next.

For the past 30 years I've had a disease that has had little research funding and when it has been funded it has often been siphoned off into other areas or gone to the wrong team.

We patients have had no control over this. Something rotten exists in the government bodies that control funding and the independent agencies.

If money had been allocated to this disease and to the right people then I don't think there would be severely affected people with ME.
~ ukxmrv

Dear healthy people with busy lives.

I'd like you to know that I did nothing to encourage this illness upon myself.

To be clear, I did not ask for, encourage, give in to a mental desire for, choose for the sake of attention seeking to be housebound and isolated unable to do much of anything.

If you believe ME is not real I can assure you your belief is in error and probably derived with very little effort at uncovering the facts.

Nothing would make me happier than to be able to contribute what talents and skills I possessed to my family and my community.
~ Snowdrop, slow onset ME that has been steadily worsening for the past 9 years or so although I had experienced less severe symptoms for decades prior.

The one thing I would like people to know about ME is there nothing you can do about it once you get it. Nobody is going to like me for saying this.

Yes you can take medications, supplements, attempt to keep your body and mind in a healthy place, pray, scream, go from doctor to doctor searching after that bit of knowledge or that latest study; but unless there is a real cure for this horrible illness your body will have to deal with it to the best of its ability.

If you can find something to keep your body strong, that is good but keep looking because our bodies needs change and you are only treating symptoms. Accept it and learn to live your life from your house, your chair, your bed.

I've had ME 26 years and, being a former expeditor, I'm the type that looks for answers; something can always be done. My conclusion is that without a true cure we might as well just accept this disease and live the best life we can.

Unless the globe realizes that this is zapping incredible talent and costing money that could bankrupt governments and that people in power can get this disease themselves, we will never solve this.
~ PNR2008

I would like the world to know that this can happen to anyone, at any time ...

The public has been told by the media and by the medical profession (excluding some exceptional doctors and researchers who specialize in ME and are usually ostracized by their peers as a result) that ME is not real, not serious, and something that the weak-minded somehow choose to develop or lack the will power to snap out of.

As you read this, please don't make the mistake of thinking that this could not happen to you. I never thought this would happen to me.
Please open your eyes and your minds to see our reality.

Please try to understand our loss.

Please don't knock what you don't understand. We would not do that to you.

ME has cost me my career, my social life, my hobbies, and friendships. I hope for a better life. You could support that hope for all of those with ME.
~ Daisybell

Dear world,

Just for one week only, stay in your bed, and crawl on the floor to go to the bathroom.

Then we'll talk.
~ Dr.Patient, Severe ME sufferer

Severe ME is an endless private torture of unbearable physical symptoms. For me *holding on* to my life and enduring the unbearable symptoms was the hardest thing I have ever had to do in my life. I understand how people with ME take their lives. It takes everything you have to get through severe ME. I am truthfully scarred by it, mentally and spiritually.

I fear going back to severe, I'm not sure I could do it a second time. I have nothing left. I used every ounce of will I had the first time round. I rest all afternoon and evening - I still live mainly in my bedroom, in bed 12 years on.

My hope is that one day no one will ever have to endure severe ME ever again.
~ Rosie26

With severe ME there are small margins, a huge risk of deterioration, and it makes medical treatment difficult due to side effects. Emergency care is a big risk, it's not adjusted/adapted to severe ME and there's very little acknowledgement of it among doctors and carers.
~ Lorene, 45 years old and I've had ME since childhood. Since age 25 it's been moderate/severe and since two years ago it's been severe, I'm bedbound/housebound.

ME doesn't kill you, but it squeezes every drop of life from you.
~ Ecoclimber

ME is not only worse than you imagine, it is worse than you can imagine.
~ Forbin

I'd like people to know of the abuses we withstand, particularly from the medical community. It's not "misdiagnosis" or "under treatment". It's abuse due to overwhelming ignorance: ignorance which is inexcusable and CAN be corrected if enough people give a damn.

Short of lie detector tests in every medical office, I don't know what we have to do in order that we be believed for our suffering.
~ SD Sue

ME is a disease like no other. We're told for most disease that we need to strive and push ourselves to get fit and healthy once more. ME doesn't abide by these rules. Over time you come to learn to live an uneasy truce with the disease, to no longer fight it and succumb at the worst times in the hopes of better days to come. Nothing else in my life has tested me this much and given such little ground in the process.
~ Andrew

This disease has wrecked my health, but it is society that has wrecked my life. The disease has confined me to the house, but a culture of cruelty has confined me to poverty and isolation. Illness stops me from growing food, while official gatekeepers tell me I don't deserve any.

Illness means I still feel cold under all the blankets, while public policy says I don't need heat.
It wasn't disease that physically and emotionally abandoned me, forced me into bankruptcy, sued to take my house, claimed I just need exercise and therapy, and constantly forces me to prove I'm poor and sick. It was people who did all that.

In the US and many other "civilized" societies it is a Crime Against Capitalists to be permanently sick. It's acceptable to be sick for a week. After that, we're depriving The Economy of a chance to exploit our labor and enrich Our Dear Leaders and their wealthy handlers.

This situation will not change until many, many more people, both sick and well, come to understand what modern social institutions are really about and who they serve. Here's a hint: they aren't here to serve working people.

The horrendous, barbaric treatment we receive is not unique to this illness, and the attitudes we experience will not change if the puzzle of ME is solved. Patients of the next mysterious, potentially expensive illness will have to go through this misery as well. AIDS patients were not the first group of sick people to be brutalized, insulted and ostracized, and we won't be the last.
When a reporter asked Mahatma Gandhi what he thought of western civilization, his response was, "I think it would be a good idea".
~ Jim, 58

If you haven't suffered, you can't understand the exhaustion and the frustration over the changes in your life, personality, circumstances.
~ Karen

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

Continue reading the Original Blog Post
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Thank you for this article @Legendrew. It is important to raise awareness of how devastating this disease really is.
When the article came online I emailed it to family members and asked them to share it in any way they felt comfortable with. My husband posted it (not sure where, didn't ask) and as a result a business friend of his who saw the post was curious and read the article. When they talked today he was asking questions about ME.

Now. . .if only I could get my Dr to read it.
Its a real physiological illness with proven physiological abnormalities with a cross between immune defiency, auto immune and chronic infections. Psychological factors have nothing to do with the cause, if depression is present its secondary to the illness just like any other chronic condition.
Great article for Severe ME Day, thanks, Andrew

It is crazy that severely affected means severely neglected

Not to mention excluded from almost all Research.
Please share this article today on social media. Help raise awareness of our situation. The world needs to know.
Thank you @Legendrew for this article and to all my fellow sufferers who have given touching testimony.
Today is the day to remember all the ones who have passed away and the most ill. Those of us who are still precariously "standing" have the difficult tasks to guard the others, defend the boundaries of human respect and pick up the broken pieces.
for me there are three things that are missing in communication about ME:
  • if you get it when young, you are denied the energy needed for, and therefore the opportunity to, find a partner and have children
  • profound lack of stamina robs people of all there abilities: mental & physical. That stamina varies massively with severity - a person may be capable for one day then disabled for two, or permanently disabled.
  • it severely disrupts or prevents education, working life, family life, social life, hobbies and even passive entertainment (reading/tv) for the moderately and severely affected.
I don't have a diagnosis of ME but I believe ME leaves a person without hope. For the next 5 minutes, or the next 5 years. That is a very dangerous situation. Ask anyone who is disabled by a crippling illness who becomes isolated and drops daily activities. The loneliness and hopelessness creeps until it is a black veil smothering you. Then you have mental illness, when you didn't in the first place...
I don't have a diagnosis of ME but I believe ME leaves a person without hope. For the next 5 minutes, or the next 5 years. That is a very dangerous situation. Ask anyone who is disabled by a crippling illness who becomes isolated and drops daily activities. The loneliness and hopelessness creeps until it is a black veil smothering you. Then you have mental illness, when you didn't in the first place...

Hope is an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one's life or the world at large.[1] As a verb, its definitions include: "expect with confidence" and "to cherish a desire with anticipation".[2]
You are wrong. Many ME pateint are fighters and that are the ones that get worse and worse because they keep pushing.

I did untill I was dying. Never gave up the opinion I could improve and I was right.

I do not believe there is a mind but that does not prevent; expect with confidence.
There is always a good lesson to learn from ME patients. Thank you for setting me straight and I apologize for superimposing my shortcomings on to those with ME.
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'It's like slow suicide, killin yourself trying to continue to live, a silent deadly world that nobody but those in their own silent deadly world can understand'