#but the impact it had on my brain remains. and hopefully is evident somehow later on lol.

[jokerfan99]

My Top 10 Favorite Anime Villains (Updated) by DarkChild316

In a different time and a different world, I did a list of “My 10 Favorite Anime Villains”. I am older now, and hopefully much wiser and now thanks to the global pandemic and my new subscriptions to Hulu and Funimation I’ve had the opportunity to go back and revisit so many classic anime that I feel like I should re-do it. Plus I’ve gone back and looked at my previous list and shook my head thinking to myself: “My God man, what in the f**k were you thinking with some of these choices!” So, I’ve gone back and redone the list, now this list is strictly for the men only. If you want to see a list dedicated to my favorite female villains, check out my list of “My Top 10 Favorite Anime Villainesses.” But for this list, here is my updated list of My Top 10 Favorite Anime Villains:

#10. Shishiho Makoto (Rurouni Kenshin): Growing up as a kid, Ruroni Kenshin was one of the first anime I had ever watched, and this guy was someone who I hated with a passion. Looking back at it years later, I realize now what an amazing villain and foil to Kenshin that Makoto was. Unlike a lot of villains on this list, Makoto wasn’t just evil for the sake of being evil, Makoto’s evil came from the worst type of trauma: betrayal! In this case the betrayal came from Makoto’s own government, where Makoto survived not only multiple gunshots, but being doused in oil and burned alive, leaving him in complete and utter agony. What puts Shishio on my list is what he manages to do after surviving death. He compiles an army of the best fighters Japan has to offer and plots to overthrow the entire Meiji Government. While in complete agony. Who else can claim that? Did I also mention he’s topping the list of the best fighters in the show? His swordsmanship is second only to Kenshin himself as he proves in their absolutely epic fight.

#9. Hisoka Morrow (Hunter x Hunter): Hunter x Hunter is a show with several great villains that truly stand out, and while Meruem was memorable, pardon me for believing that Hisoka was the standout villain from that show. A devious killer and master Nen user, Hisoka is driven by little more than his desire to find and kill strong opponents. Be they young children or master criminals, he’ll pursue them to the ends of the Earth with a bloodlust on par with that of a wild predator. Likewise, he doesn’t care what happens to himself or others in this pursuit. Mass civilian casualties, the loss of his own villainous allies or even the loss of his own limbs barely phases him, so long as he gets to fight with someone that tests his limits. As a result, he more often than not embodies chaos incarnate, wreaking havoc in his pursuit of battle and leaving a mountain of corpses behind him. Needless to say, this puts him at odds with the series’ protagonists at regular intervals. Not only do Gon and his friends fit the bill for what he seeks, but they often take on enemies that prove to be exactly what Hisoka is looking for. And yet, this also serves to make him all the more interesting. Where other villains might strike out at the protagonists and heroes immediately, Hisoka schemes, allies himself with and double-crosses people regularly, always finding the best angle to work in order to reach his goals. He may not be a world-ending anime villain on the level of a Meruem with seismic ambitions, but he’s undeniably the most interesting and brilliant villain in Hunter x Hunter to see at work.

#8. Izaya Orihara (Durarara!!): If you think of a list of top anime villains and this guy isn’t one of the first people who comes to mind, please raise your hands so I can have a few words with you in private with no cameras or eyewitnesses. The crazy thing about Izaya is that he doesn’t even realize he’s evil, and that’s what makes him great. He loves humanity; from the depths of his bones he loves us all. This is why he makes it onto my list; he does progressively more cruel acts against humans, putting people in situations that generally lead to their deaths. He is also a master of parkour and highly skilled with a switchblade in his hand (as evident in the above picture), which he generally only uses in dire situations or fights against Shizuo. In short, I absoulutely love this guy. I thoroughly enjoyed the way he manages to manipulate an entire populous, and that’s why he’s more than earned a spot on my list.

#7. Dio Brando (Jojo’s Bizarre Adventure): You might have thought it was someone else, but it was me, Dio! All meme-worthy jokes aside, Dio Brando is unquestionably one of the most iconic anime villains of all time and, thanks to his series’ late-blooming popularity outside of Japan thanks largely to the 2012 anime adaptation, one that still feels modern in our minds. Dio is a tenacious bastard that takes advantage of the generosity of the Joestar family to further his own power, being intolerably dickish to Jonathan by constantly tearing him down, trying to make him look bad in front of his dad, spreading rumors to sully his reputation, and sabotaging his relationships. This escalates into killing his dog (his f***ikg dog of all things!), poisoning and later stabbing his adoptive father (I mean WTF!), and becoming a freakin vampire. Even after decapitation, Dio gets his revenge and sets in motion many of the events of the series, making a formal return in Stardust Crusaders as the main villain once again. With raw ambition taken to the extreme, iconic lines, poses, and outfits, incredible abilities from Aztec mask-induced vampirism and the time-stopping power of The World, Dio’s menacing presence towers over his series and over anime as a whole, which makes him MORE than deserving of a spot on my list.

#6. Light Yagami (Death Note): Yes, he’s a VILLAIN, get over yourselves Light Yagami fanboys! Anyway, there are a number of different adjectives and superlatives that could be used to described the lead character of Death Note: Diabolical, calculating, and determined to make the world in his own image all describe Light who was easily the most clever man in  Death Note, as evidenced by the layers upon layers that composed his elaborate plans.  Light started out as a good kid, doing well in school and heading to a bright career in police work like his father. But when he gets possession of the death note, he begins a remarkable descent into a disturbing mastermind who becomes judge, jury, and executioner for the entire world. But what truly makes Light's character stand out remains complicated throughout the story. His ultimate goal is to make the world a happier, safer place; a noble but perhaps misguided goal. His idealism and nobility still shine through when he doesn’t have the Death Note. When he temporarily relinquishes ownership of the death note to throw L off his trail, Light loses all memory of the death note and he reverts to his normal personality. His sense of morality returns and he shows more compassion for those around him. He even refuses to use Misa Amane to get information out of her when L asks him to. These qualities help to create a complex character who ends up being a detestable villain, yet you still kind of root for him to come out of this story as a winner. Light’s progression through the series is marked by his sheer brilliance. He's got a calculated and strategic mind that would make the great philosopher Machiavelli jealous, and the power of the death note adds a callousness that makes him free to use people in whatever way necessary to accomplish his goals. It’s highly entertaining to see his intricate plans play out. But Light’s messiah-like ego is just as big as his brain, and that arrogance ultimately leads to his tragic downfall.

#5. The Major (Hellsing): An evil Nazi Scientist, I know everyone is just rolling their eyes right now thinking I’m reaching for the low-hanging fruit for this one, but just hear me out here. While he may seem like an obvious pick for a list like this, The Major’s goals, however, are somehow far more unhinged than what may first appear. Despite being an impassioned orator and uncompromising strategist willing to sacrifice countless soldiers, the Major himself had no especial loyalty or passion for the cause of Millennium. His sole obsession is to plunge the world into an unending conflict to the point of endangering not only the lives of others but also his own. The Major’s leadership of Millennium, his decades espousing the genocidal ideology of fascists, and subsequent war against the Hellsing organization, the Vatican, and the entire world serve only as a pretext to satiate his insatiable bloodlust. The Major is one of anime’s most insidious villains, a charismatic, nihilistic sociopath driven purely by his sadomasochistic death wish.

#4. Shou Tucker (Fullmetal Alchemist): Now, you may be recalling that in my previous version of this list, I had Envy listed as my choice as my favorite villain from this show. Well after careful reconsideration, I’ve had to reevaluate my decision and give that spot to this creep, because while Envy’s actions were despicable to a point, they PALE in comparison to this guy! He only really appears in one episode if I remember correctly, yet in that one single episode, he made more of an impact then most villains make in a lifetime, which really says a lot about this guy’s character. What was it that made him so memorable you ask? Well, it could have something to do with the fact that this man transmutaed his own dog and daughter to create a talking chimera, which hadn’t been done before, and for what other reason…all in the name of recognition in the world of alchemy! That mere fact alone made this guy the most hated man in all of anime, the fact that he sacrificed his own family for the sake of fame, with absolutely no hint of remorse, made this guy the definition of an absolute living piece of shit and the only thing worse is how the episode ended, but I won’t spoil that one for you if you haven’t seen it.

#3. Gendo Ikari (Neon Genesis Evangelion) Up next is a man competing with the likes of Medusa Gorgon for the title of “Anime’s Worst Parent”, Gendo Ikari, please step up to the front of the congregation. Now Gendo is a man who’s list of atrocities throughout Evangelion is far too many to name, but I’m going to try my best to list them here: You have being actively complicit in the premature instigation of a biblical apocalypse, resulting in a near extinction-level event that caused the death of nearly two-thirds of the human population. Emotionally neglecting his own son Shinji estranging himself from him for over twelve years, only to offer him up as a sacrificial pawn in his bid to artificially bootstrap humanity’s ascent into evolutionary godhood so that he could be reunited with his dead wife. Cloning said wife’s DNA into a harem of emotionally dependent albino ingenues who share a dogged infatuation for their creator. And that’s not even mentioning the horrific emotional abuse and mental manipulation he inflicts on Dr. Ritsuko Akagi and her mother Naoko. All-in-all Gendo is proof positive that love not only has the capacity to overcome any obstacle, but sometimes it can truly make monsters out of us all.

#2. Griffith (Berserk): Griffith did nothing wrong; at least, not by his own drives and ambitions. A peasant who grew to become the leader of his own mercenary band, Griffith was a self-driven man who pursued his desires with unparalleled efficiency. No matter the situation or obstacle, he found a way to overcome them, whether that meant facing down an army of thousands or assassinating a country’s leaders. All the while, he amassed a legion of friends and followers who would follow him to hell and back, caring for him as much or more than he cared for them. As a result, they were dragged down with him when his ambitions saw him imprisoned, tortured and maimed. They cared little though, risking life and limb to save him and help him salvage a life with what he had left. That wasn’t enough for Griffith though. When given the option to become a demon and continue the pursuit of his dreams, he whole-heartedly accepted it; even though it came at the cost of sacrificing the lives of each and every one of his friends and allies. But that wasn’t the worst of it, to further spite the early desertion of Guts, Griffith proceeds to rape Casca, Guts’ love interest, in front of him as Guts is held down by demons. So yes, Griffith did nothing wrong by himself. By everyone else though, he did them the worst of injustices, and continues to do so with each breath he takes, all of which makes him a compelling and infuriating villain.

#1. Johan Liebert (Monster): I’ve covered a wide variety of monsters (pun fully intended) on this list, but THIS monster (again, pun FULLY intended) truly takes the cake when it comes to anime villains. A serial killer who would fit in well in any blockbuster film, Monster told the story of a man who had truly become monstrous; a charismatic, intelligent sociopath with no other goal than to kill everyone else in the world. Johan didn't just kill people, he made other people into monsters just like him. This skill of his corruption is first displayed in his youth, when he used stories to convince the other boys in his orphanage to kill all the staff, and each other. Johan is often compared to Light Yagami of Death Note, but the two couldn’t be any more different. Light's fatal (and genius) flaw is his own ego, which leads him to put his own life above all else, even his goal of changing the world. But Johan has never been afraid of death. Quite the opposite, he welcomes and embraces it, being more than willing to put his own life at risk, and one of his signature traits is how he challenges people to shoot him. Another of Jonah’s signature traits is his skills as a masterful manipulator. Where Light and other on this list had to resort to supernatural means to get what they wanted, Johan just used his own wits and knowledge of human nature. He's easily the most frightening villain on this list because he’s the truest to life villain on this list and he exposes the base human nature of his victims and of human society. Monster's remarkable story was almost entirely due to Johan alone, and it’s why he’s #1 on my list.

So that's my updated list, what did you guys think about it? Love it, hated it? Go on and tell me what you think and let me know who your favorite anime villains are. See you soon!!!

Deviantart: https://www.deviantart.com/darkchild316

[m-alcn]

And yet again, her classmates are somehow buying into that little liar’s big, fat, unrealistic lies. Why was Adrien going along with this he was there when she exposed her as Ladybug!

Granted she could have maybe got her point across even more if she weren’t yelling, but she hated lies. And there was no way she would stand for more of them!

“—My tympanum ruptured because of the sound of an airplane motor that was in the runway when I saved Jagged Stone’s kitten.”

Marinette sighed, arms crossed, exasperated that she was the only one in her class that was using her brain. “Jagged Stone has a crocodile.” But even as she was saying that, the beginnings of an idea were forming in the back of her head, carefully weaving together into a plan. Just like always.

She had to fight hard to keep the triumphant smirk off her face, though some of it showed.

“That’s now. He had a kitten before, until he found out he was allergic,” Lila said, innocent as you please, conniving little thing with a lie for everything.

But Marinette wasn’t going to let her get away with it this time.

So with wide innocent eyes, she layered sugary sweet layers into her voice. “That’s a super story Lila!”

Lila paused, narrowing her eyes at her a little. “It is?”

“Oh yes,” Marinette said, opening her eyes even wider, just like when she played Chloé during their last movie. As she made herself look as unassuming as ever, she retrieved her phone from her bag and unlocked it, dialing a number that still made her internally squeal even now. “I want to make sure I have the story in its absolute details. But I just have to do one thing first,” she held up her index as the dial tone finally ended.

“Salut!” Marinette cheered into the phone, her classmates looking at each other confused, Lila only narrowing her eyes even more. “Oh I know it’s been ages! I hope they aren’t working you too hard from last time. That’s great! You deserve the break,” as she kept talking she maintained her cheery façade as she made eye contact with Lila. “Yes! That’s exactly who I needed to talk to! Thank you so much!”

Everyone remained confused, exchanging wary looks, not daring to interrupt, even though their Class President was really not being herself.

Alya stared at her, convinced she’d lost her mind, sharing a look with Nino who only shrugged. Big help there, you big lug.

“Hello! Yes, well I… no… that’s… well it’s great to hear you too!” she was finally able to get a word in edgewise, but she had to watch what she said now. “You did? You are? That’s fantastic! You want me to do that again!” here Marinette had to stop herself from really squealing, but she had to stick to the plan. “I’ll be delighted! Like that last CD was a dream come true!”

Alya looked at Marinette with slowly dawning realization, finally having a bit of an idea as to what she was doing.

“Yeah, I’m really sorry to bother you like this but I just wanted to check with you, I know how harassed you get so I needed to make sure of some rumors. Can I put you on speaker phone? That’s great! But please wait until I introduce you, I have someone here who’s just dying to hear you! Thank you so much, you definitely rock! Yes, I meant that one,” she laughed as he always had the ability to cheer her up.

As she put it on speaker, Marinette injected even more cheer into her face, making her voice as kind as possible. “So Lila, mind repeating that wonderful story, I have someone who just can’t wait to hear it.”

Lila looked at her warily, feeling trapped and cornered though not sure how. She was the one who could spin lies into silk, so why was she feeling tangled. She should proceed with caution. “Why?”

“Everyone needs to know how much of a hero you are!” Marinette spread her arms, smile starting to hurt as she pressed her teeth together.

“I don’t want to spread that around.”

“Then why did you tell it to the class?” Marinette pouted, the picture of innocent confusion.

“Well they’re my friends,” Lila smiled back at her sweetly, “you tell your friends these things.”

“But you were new and you were still telling them when they were strangers,” Marinette had to work hard not to show her anger, even one bit. But oh was she good. In a very bad way. “Well Alya, why don’t you tell us her act of bravery. You’re a reporter, you love reporting don’t you?” she blinked big blue eyes at her friend, who inched a bit away from her, because somehow that overload of sweetness felt way more dangerous than any anger.

But Alya was curious now, after all that story would be newsworthy, she should have probably seen it. And the way Lila was now avoiding telling her stories was a bit suspect.

“One Mlle. Lila Rossi saved Jagged Stone’s kitten at an airport,” Alya kept her eyes on Lila now, her best friend usually had good instincts and while she overreacted a lot, it wouldn’t make sense for her to be jealous given the whole thing with Kagami.

“WHAT!” the very familiar – even over the phone – voice of Jagged Stone was very loud in the relatively thick silence of the classroom, startling everyone but Marinette who was expecting it, she took an almost inappropriate amount of pleasure seeing Lila blanch . “Cat? What cat? Penny did I have cat?”

“No Jagged.”

“Why would I ever betray my precious Fang!”

“Oh I never implied that. I know how much you love that sweetie,” Marinette interjected, because she really did like Fang and to not accidently hurt the feelings of her favorite singer. “Apparently you had a kitten before you had Fang, but you don’t anymore because you’re allergic. That’s too bad, cats can be cute.”

“I never ever heard of this girl. What was it Liar—”

“Lila,” Marinette, barely suppressing her smile, corrected before Lila could, though she could see her fuming as the class turned their skeptical eyes on her.

“Don’t know any. Plus, I don’t have allergies, I just don’t like those little furballs. They completely destroy my rock and roll vibe, you know how it is. You understand my vibe completely Marinette,” Jagged sounded proud, like a favorite uncle and while it was a bit embarrassing, it was also wholly satisfying to see Lila turn red and almost purple.

Ugh she was getting akumatized again wasn’t she.

“Anyway, Marinette my favorite collégienne, when can you design an outfit for me. Or a new CD cover. The last one you did was really rock and roll and completely Jagged Approved. I got it, both! What do you say?”

Marinette felt a very real smile spread across her face as Lila’s jaw dropped. “I would be honored. If you send me your ideas and opinions on the outfit and a deadline, I think I could start work on it today.”

“You rock and roll, my talented little designer! If you need anything just, gimme me a call. But I gotta roll.”

“FANG! FANG! NOT THE COUCH!” there was a crash that accompanied Penny’s scream, evidently done relaxing for today.

“Awwww, Fang, who’s a good boy! Who’s a goo—”

And on that wonderful note the line cut off, leaving everyone staring at the phone like it grew legs and crawled out of the room.

Marinette just shrugged it off. It was just Jagged being Jagged. And Penny not relaxing like she should.

“It’s weird that he doesn’t know you,” Marinette continued to play dumb, as everyone turned to look at Lila.

“Why did you do that Marinette?” Alya asked.

“I was there when his stalker fan turned into an akuma and attacked him. I don’t think he likes that or rumors spread about him.”

Immediately feeling the weighty stares, Lila refused to look at them but fixed her eyes on that Marinette. “Why would you hire someone to make me look bad? What did I ever do to you?” she made sure to sound sad and pitiful, but it wasn’t having much impact on anyone.

Marinette grit her teeth, but took a deep breath to keep calm. “How would I know the reason you would tell us you lost your hearing?”

“You must have done it because you’re jealous he wrote a song about me and not you.” She was grasping at straws, but she would not go down because of her.

He did write a song about me, as Ladybug, but go off I guess.

Everyone was scowling at Lila now, except for Chloé who looked to be enjoying herself way too much.

“I don’t think we really believe you Lila,” Marinette said, keeping her tone calm and even, waiting for the storm.

“I think you’re the one actually lying. You, designed his CD? There’s no way that’s possible.” She pointed her finger at Marinette.

“She also did his Tour Eiffel glasses,” Alya finally came to her friend’s defense, narrowing her eyes.

But Lila just huffed. She was the one who made lies about knowing celebrities, not that nobody.

“You should read Metal Lourd magazine Lila. There was an article. He’s even been to my house.” Marinette crossed her arms, able to breathe again but getting bored with this nonsense.

“Pfft. Right.” Lila scoffed.

“It was on TV. You could look for the episode if you want.”

“Like you’re any good at designing.”

“Well my mère, Audrey Bourgeois, the famous fashion critic, complemented her on her designs,” Chloé interrupted, happy to use that painful memory to drag someone now; it would put that bitch in her place.

Marinette stared at her in disbelief. But it looked like she might hate Lila more than she hated her. Well united against a common enemy as civilians was a bit new. She needed time to wrap her head around that.

With a final breath, she headed to the back row, sitting down. “I wonder if she lied about that, what else she lied about. Hey Alya?”

“Yeah?” Alya wasn’t so sure how to take her best friend sitting in the back now. And she sent her there without even asking. She needed to apologize. Hopefully she would forgive her. But for now she never looked away from Lila, as though if she took her eyes off her she would find more tricks to play.

“Didn’t you tell me she was Volpina?”

“Yes.”

“Maybe she lied about knowing Ladybug. You should probably ask her.” She was so going to patrol near Alya’s house later.

“You know what, I think I will,” Alya said, arms crossed as Lila slowly began backing out of the classroom.

Note: look what i wrote because i'm still so salty. This is my first ML fic so i dont know about characterization. And if you're wondering why Adrien isnt there he's such a doormat that he might as well not be. I could try to post this on ao3 if anyone wants

@lnc2 @purrincess-chat @simplystefanie-rae @spottedcutie @sidsinning @nobodyfamousposts

@greninjastorm

else wants to be tagged for this salt

[mememe-posts]

Just some of the reasons ME sufferers suffer so much… As Jenn Brea, the creator of Unrest, has stated, if she lived in the U.K., without access to the drugs that allow her to function on some level most days (whilst still being ill) she would still be bedridden with ME years later.

 Last week, Unrest, a brilliant, powerful portrayal of ME, was shown to MPs and members of the Department of Work and Pensions and other organisations involved with ME. The Unrest film’s team were joined by long-time advocates of ME patients, including the Countess of Mar, the ME Association and other heavyweight campaigners and specialists who have fought for justice for patients for many years in the U.K.

http://www.meassociation.org.uk/2017/10/me-association-review-of-unrest-in-parliament-i-cannot-recall-a-parliamentary-meeting-where-we-have-had-so-much-genuine-interest-in-mecfs-26-october-2017/

 It’s significant for ME to be depicted because for those wishing to support sufferers, it may bring more understanding. The reality of ME, a disease more prevalent than MS, which can be ‘more debilitating than most medical problems in the world, including cancer, late stage AIDS (until two weeks before death)’ is that it has been ignored and its sufferers have been left untreated.

 And I’ve been lying here thinking about what happens next.

 There is momentum with Unrest and many other voices and campaigns to see change and justice for the ‘millions missing’.

In particular, in the U.K. there is a call for a public enquiry regarding the decades of abuse and neglect of ME sufferers being requested by Dr Myhill via MAIMES.

And as I’ve sat thinking about that momentum and what needs to happen, I’ve thought of the great minefield it is trying to understand why this is such a big deal and I’m frustrated at how bewildering it still seems to so many.

How can the public even begin to grasp this mistreatment if they’ve only ever been exposed to the trivilsation and dismissing reports of mainstream media?

Why have people been left to suffer?

Why are seriously sick people sometimes so disbelieved and abandoned even by loved ones?

How can it  be possible that there is no real treatment, when key research 30 years ago explained at least part of the pathology of ME and yet has been ignored?

 So, I decided to create a summary of some of what I know, some of the information I’ve gathered,some of my lists of words over the last few months (in this particular severe relapse) in an attempt to paint the bigger picture. There is much politics and complexities of years of ignorance surrounding ME. And this just touches the surface of it all. It’s by no means the definitive guide. There are so many articles and blogs already excellently representing this information by more knowledgeable people than me and I’m grateful for what I’ve learnt from many others. Especially other sufferers. But I just wanted to be able to just see  all these facts together with my own thoughts and ponderings. For my own brain and hopefully for others too, who are wanting to understand.

 It is ABSOLUTELY CRUCIAL to understand the background story of ME to fight for yourself as a sufferer or to advocate as a supporter.

I think this is a comprehensive summary that may take 20 minutes to read but will allow readers to grasp the complex situation of the world of ME.

People often ask how to help. I’m too ill to accept cups of tea and offers to clean and other lovely things but reading this will be the best support ever.

1.     THE REALITY OF ME VERSUS THE STIGMA

“All diseases are cruel but some have a refined brutality all their own. One such is ME..It is a monster, often hidden in plain sight; the suffering it inflicts is limitless” Llewellyn King

 ME sufferers have faced decades of disbelief, ignorance, humiliation and no real treatment, despite being incredibly sick and despite 8000 papers detailing the biomedical findings of research. 

Here is a great conclusion documenting some of these findings so far:

https://medium.com/@rochellejoslyn/me-cfs-research-roundup-brief-highlights-of-biomedical-research-to-date-9249f17f291

It is far from the often repeated ‘mystery’.

It is being purposely and systematically ignored across the world.

It is not the ‘just tired’ illness.

It is not fatigue.

It is not the high achiever’s illness or the malingerer’s (although you are often accused of causing your disease by somehow simultaneously being both.)

It is not manageable, psychosomatic or imagined.

It is the near-death, life-consuming, unpredictable, bone-crushing, unrespecting, devastating multi-system, multi-organ disease.

“ME is a disease that is “often more debilitating than most other medical problems in the world, including MS, cancer, undergoing chemotherapy or HIV (until last two weeks before death).”

Taken from The Clinical Case Definition and Guidelines for Medical Practitioners for ME. 

 And yet it remains untreated.

 2.     ME IS NOT CHRONIC FATIGUE SYNDROME

“Separation of classic ME from CFS MUST happen..We will then lose the heterogeneity confounding research and treatment” Jane Colby , www.tymestrust.org (ME Children’s Charity)

 ME is still classified as a neurological disease by the World Health Organisation and was once being treated and investigated seriously in the UK.  It is very similar in its neurological make up to Multiple Sclerosis.

ME or Myalgic Encephalomyelitis (meaning pain and inflammation of the brain and spinal cord) was relabelled as Chronic Fatigue Syndrome -a somatic illness or functional (emotional) disorder without any scientific evidence. 

And in total abandonment of solid evidence of significant physiological impairment.

The unhelpful CFS (Chronic Fatigue Syndrome) label since the 90’s has been used to further dismiss patients for their ‘fake illness’.

 As author, ME sufferer and advocate, Nasim Jafry states in her blog below, having been diagnosed in 1984 and witnessing this huge shift:

“The biopsychosocial narrative is so embedded, it will take a juggernaut to shift it [the hijacking and reframing of the illness as ‘chronic fatigue’, the ignoring of robust science, the toxic influence worldwide of the psychological framework]”

http://velo-gubbed-legs.blogspot.co.uk/2017/10/my-thoughts-on-unrest-2017.html

 CFS, at least in the UK, is now used broadly for all kinds of fatiguing illnesses originating from very differing causes. The name changed, it seems, specifically to avoid financial implications*, both in correct, more expensive physical medical treatment and in paying out benefits and insurance. This was triggered by epidemics of the disease in the 1980’s, when insurance companies, particularly in the US, faced huge payouts.

It allowed already established ME research, showing likely origins, physical abnormalities in patients, with detailed, highly specific diagnostic criteria by the likes of Dr Melvin Ramsay, to be brushed aside as unrelated.

Hence the new biopsychosocial model took hold. ‘It’s all in your head’ became the response of doctors, the media and onlookers.

*This financial saving however is still very short sighted as the economical impact of people out of work with ME in the UK alone was approximately £3.5 billion last year, due to lost productivity, taxation and benefits* which far outweighs the cost of proper research, treatment or investigations that could be implemented, as stated by the Countess of Mar last week. *source: ME Association link above

 In the UK, not everyone now diagnosed with CFS has ME, due to CFS’s broader, watered down, decreased symptom inclusion. The predominant feature of ME, Post Exertional Malaise, does not have to be evident to be diagnosed with CFS. Post Exertional Malaise (PEM) means a severe intolerance to physical or cognitive activity, which causes an increase of symptoms, resulting sometimes in weeks or months of recovery (or never recovering).

 Everyone with ME however will now be lumped under CFS, meaning more serious, sometimes degenerative symptoms of classic ME, such as  PEM, are simply ignored. And those patients with no knowledge of these inconsistencies are put in ever- harmful positions of incorrect management of the illness.

 (I personally *detest* the Chronic Fatigue label and will never use it for the pain, laughability and abuse it has encouraged and allowed both in my own life since I was 14 and in millions of other cases. Others use it to mean classic ME, including renowned scientists, film makers, other sufferers etc. and I respect them but please don’t use it on me. I was diagnosed with ME in 1993, just as the name was being changed and just as the stigma started to be further established, purposely by those in power. I fit Ramsay’s criteria succinctly and unsurprisingly, not the CFS criteria, even though I now have to fight the CFS title, as ME is not acknowledged.)

3.     INCORRECT TREATMENTS AS THE ONLY OPTIONS FOR ME

Considering we are talking about a disease that has been studied for at least a quarter of a century, and remembering it can be one of the most debilitating diseases in the world, affecting millions, it is deeply troubling and outrageously neglectful that there is such a void in terms of treatment.

In the UK, and elsewhere, the medical community stubbornly hold onto the psychosomatic model and the treatments outlined in the deeply flawed, now debunked PACE trial, namely CBT (Cognitive Behavioral Therapy, adapted specifically for CFS) and Graded Exercise, a therapy designed to increase activity in patients. These treatments are now the dominant treatment plans offered via Fatigue Clinics across the UK.

(If you don’t live near to a Fatigue Clinic, there is nothing.)

The PACE trial and its theories form the basis for the NICE guidelines which the NHS follows to administer treatment.

This means you will also not be offered further investigations, tests or referrals for concerning symptoms (more on this below). http://me-pedia.org/wiki/PACE_trial

Patients and advocates who have protested the NICE guidelines since 2007 when they were last reviewed, already knew how dangerous the treatments were, especially considering the harm caused when graded exercise is inflicted on those with PEM.

However, more recent sufferers will not be given this information and in total desperation, facing unrelentless long term illness and not even contemplating that this advice could be incorrect (and crucially, not being informed that this is a psychosomatic model),  they enter into these treatments.

Fatigue clinics, run by clinical psychologists, continue the treatment of our ‘false illness beliefs’ and thereby, however implicitly, blame and shame the patients when they don’t recover from incorrect treatment. Patients are not told of the biomedical causes of their illnesses and they are pushed into ignoring symptoms.

It is much like an example Jenn Brea gives of giving diabetics sweets as treatment and then blaming them when they get worse. 

Treatments aren’t just unhelpful; they are potentially permanently disabling, as has been the case for hundreds and hundreds of patients.

People with severe ME who can’t attend these clinics or their doctor’s surgeries are told there is no treatment. 

Severe/ Very Severe ME means permanently housebound or bedbound; severely limited, sometimes living completely in darkness, tube fed and void of all life. This free 1-hour film depicts this state of illness very powerfully. (Use code VOICES for free access)

http://voicesfromtheshadowsfilm.co.uk/http://voicesfromtheshadowsfilm.co.uk/

By the time many less severely affected people realise this treatment is actually incredibly ill-advised and making them worse, it’s often too late and they too have become severely limited and affected, often becoming housebound or bedridden indefinitely by these programmes, with a whole heap of added shame and confusion piled onto them as they wonder why they ‘failed’ at these ‘proven’ treatments. https://www.buzzfeed.com/camillamaxted/this-is-why-i-quit-exercise-therapy

Fatigue Clinics continue to give misleading outcomes of successful treatment by excluding those in their data who either couldn’t attend or failed to continue the programme. And remember, clinics are treating people with CFS- which could and does include other conditions that may benefit from increasing activity, such as depression (which often causes severe fatigue).

Still the U.K. continues to endorse these treatments, as well as harmful treatments such as the Lightning Process, which was recently hailed as a ‘huge success’ specifically for children with CFS across mainstream media. However, it’s results have never been fully published by Esther Crawley and Bristol University, its criteria for patient inclusion was wide and vague and the treatment involves:

*Being told to never say you’re ill again

*Being told you have chosen to have ME and you choose if you remain ill

*Only being allowed to report positive outcomes.

So, a highly manipulative, very scary, confusing, extremely traumatizing experience for sick children who are made to believe it’s their fault and pushed beyond their physical limits, making them more ill.

And therefore, a far cry from a scientific success.

But the media still published it, without any investigation, causing potential further harm to patients and adding further weight to the ‘it’s all in your mind’ narrative. 

Here is one woman’s story of the Lightning Process that has left her bedbound, unable to speak, sit up or swallow since 2008: 

http://www.jkrowbory.co.uk/2017/09/when-you-beckon-lightning-and-invite-it-in-for-tea/

http://www.meassociation.org.uk/2017/09/me-association-statement-lightning-process-and-smile-trial-in-young-people-with-mecfs-19-september-2017/

Interestingly, treatment comprising of Graded Exercise have now been quietly removed from US health guidelines, as they’ve recognised that they are inappropriate and harmful. 

 4.     PROVE YOURSELF WORTHY OF BEING BELIEVED

 Imagine being so terribly ill and being told you’re lying or having to prove that something is wrong. This is ME.

Due to what is briefly outlined above, getting help and support, medically, financially, even relationally can often be another huge battle facing those already battling serious ill health.

Those in establishment, namely renowned psychiatrists, who have been most keen to keep ME labelled as CFS and as a psychosomatic or emotional disorder, have long since overruled all other voices to form the very defiant ceiling of dismissal around ME, meaning access to any non-psychological treatment is slim or has to be literally begged for.

 The NICE guidelines state use of drugs, such as anti-virals don’t work (proved otherwise across the world in trials and in the minority of patients who can access them) nor is there any point testing extensively for abnormalities in the body. 

Other advisory material given to medical professionals regarding ME encourage doctors not to refer their patients even with serious developing additional symptoms, causing many cases where cancer, heart disease, thyroid problems etc. are not tested for, acknowledged or treated in time.

GPs are encouraged to accept what the patient says but not to encourage ‘illness beliefs’ i.e., don’t engage proactively with their concerns.  A+E guidelines for diseases such as ME are simply not to take the patient seriously (even in a common seizure/paralysis/breathing difficulty scenario) and to assume symptoms are somatic and to not waste resources on them.

Patients who are severely ill and housebound or bedbound are routinely ignored and denied access to medical care. Even if requests are granted, the stigma of ME runs so far and wide that even further referrals will often end in further shame and another discharge.

It must be said that there are some doctors willing to listen, to be educated by their patients and refer on but they are few and far between.

80% of housebound patients are refused home visits from their GP and 65% of patients felt they had been offered no advice on how to proceed after diagnosis. (2001 report for Action for ME)

And it must also be said that most doctors just do not understand. They are simply not trained in ME in medical school. They are not educated in physical abnormalities and established research of ME and are simply following the guidelines put in place.

 Refusal to participate in harmful treatment programmes can mean the refusal of any further offers of help or financial help via DWP. There are cases of people refusing Graded Exercise, knowing how harmful it is and being told they do not want to be well and therefore do not qualify. Indeed, very few people with ME are granted benefits without appealing because of the Psychosomatic, ‘non-illness’ label.

And at the extreme end, refusal of treatment can lead to being sectioned or removed from a family home (more on this below). http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html

This all means many patients give up begging for medical help, due to repeated malignment, humiliation and genuine fear as to how they will be assessed. I personally am terrified of doctors from my own experiences and each interaction trying to get any help is daunting and exhausting, involves pages of print outs to plead with someone to take me seriously and still is usually highly unproductive.

 This void of information and training is leaving many suffering alone for years or decades, totally neglected and unaccounted for. 

And it also leaves open a wide window of opportunity for money-makers, quack therapies and secretive, expensive treatments as desperate people without help search for their recovery. This often leads to more financial pressure, emotionally draining experiences and further disappointment as miracle cures prove unmiraculous.

A handful of ME specialists around the world offer more hope but still have no cure.

 It is hard to place enough emphasis on the effects of not being believed or treated; of continued disbelief and trivializing of such serious illness. Many sufferers agree that the stigma and helplessness they feel from being left to cope alone  is as painful as the illness itself.

The NICE guidelines are not due to be changed until 2020. 

And who indeed will be reviewing those guidelines?  It must include patient groups, recognised researchers, doctors who have had success treating patients. Not a repeat of the current fiasco. 

 We find it hard to believe that in the U.K., where we are privileged to receive outstanding healthcare via the NHS, that this could be the case. Mistreatment is much slicker and more implicit these days, after years of enforcing the lies, but it is still inexcusably cruel and unacceptable, even when delivered by unknowing professionals.

5.     THE POWER IN THE WRONG HANDS HAS LED TO UNJUST TREATMENT AND ABUSE OF PATIENTS AND HARRASSMENT OF GENUINELY COMPASSIONATE DOCTORS AND SUCCESSFUL RESEARCHERS.

The psychiatrists who rule the ME narrative are part of the medical establishment and have so far been deemed untouchable in this debate. (Simon Wesley of Kings College London has even been chosen by Theresa May to lead an independent review of the Mental Health Act, received with much criticism by many professionals both in and outside of the ME community. ://www.thecanary.co/discovery/2017/10/18/dozens-leading-professionals-just-slammed-theresa-mays-controversial-new-mental-health-guru-letter/  )

This group of psychiatrists have also gained financially from advising the Department of Work and Pensions and insurance companies in how to treat ME sufferers (in summary, it’s not real, they can work if they choose, no benefits or insurance needed)

The DWP (who save millions with the help of this ‘fake illness’ standpoint) in return funded the psychiatrists’ £5million, highly flawed PACE trial, continuing a circle of gratuitous back scratching and neglect of sufferers. 

 They also have profound influence over the Science Media Centre, controlling the ongoing media trivialisation and the unhelpful, repeated ‘It may be real after all!’ headline, fueling the question mark over sufferers’ mental health for years and years, keeping the true devastation of ME hidden. 

 “They keep on recommending harmful treatments, based on manipulated trials, conducted by people with a conflict of interest” (Brenda Vreeswijk)

That’s why another project, the MAIMES campaign (Medical Abuse in ME sufferers) is so important. It is calling for a public enquiry to address this. 

https://youtu.be/LasPOnRx1Ek

Here is a 10-minute clip by Dr Myhill, one of a handful of doctors in U.K., who has practiced outside “the narrow confines of conventional medicine” re ME, to “diagnose properly, establish underlying mechanisms and treat patients”. She’s been investigated more times than other any doctor, had her work sabotaged and eventually went into private practice, to allow her to continue to try to be effective in this field.   

The Establishment’s main concern of Dr Myhill’s work was that “all of the patients appear to be improving and none are likely to complain about their treatment” * (internal GMC memo, 2006), which is really very illuminating! 

Her refusal to abide by the non-successful, incorrect, gaslighting, psychological treatment guidelines caused much anger. 

(* From Diagnosis and treatment of CFS and ME: it’s mitochondria, not hypochondria: Sarah Myhill) 

 Other doctors trying to help their ME patients, by following biomedical research and treating ME rightly as a physical disease, are often harassed, taken to court and/or have their licenses revoked.

Researchers have had their work shut down when they discover considerable evidence. The film ‘Forgotten Plague’ documents part of this story well.  http://www.forgottenplague.com/

 Grants applied for in the area of ME or CFS are routinely turned down and some of those who have been part of uncovering the PACE trial debacle were threatened not to report their findings by the medical establishment. 

 In order to see improvement in the treatment of ME, the current guidelines and most influential voices need to be removed from the very top, to make way for believing, scientifically based, concise responses.

Significant change will not happen any other way. 

6.     RESEARCH PROVES THE PHYSIOLOGICAL PROCESS OF ME AND NEEDS MORE FUNDING

As stated above, there are over 8000 papers detailing the causes or abnormalities in ME. Some of these papers are decades old. As Nancy Klimas, from the Institute of Neuro-Immune Medicine, quotes in Unrest, very blatant signs of acquired immune deficiency were found in patients all the way back in the 1980’s. The evidence has always been there.

Other research is relatively new and still painfully underfunded.

Problems in energy production, inflammation, increased lactic acid production, ongoing infection, brain abnormalities or signs of brain injury, decreased blood volume, central nervous system dysfunction, cerebrospinal altercations, low cardiac output have all been found and that is a much shortened list.

So far, this research is side swept or too small, due to the lack of funding. Contrary to the Establishment’s psychiatrists who claim that ‘militant, angry, uncooperative patients’ scare researchers away, it is in fact the case that the biggest funds for ME/CFS research goes predominantly towards their own biopsychosocial model of work (with Esther Crawley apparently receiving the biggest grants for therapy trials such as the Lightning Process).

A lot of biomedical research is funded by patients themselves or fundraisers as they involve themselves in attempts to find answers.

Recently, the NIH has awarded four ME research centres in the U.S $7 million to further coordinate research. This is still a tiny amount considering the scale and severity of illness, but it is heading in the right direction. Sadly, it means noteworthy scientists such as Ron Davis still receive no grants for their potentially enlightening projects, which could lead to diagnostic tools and treatments. (Ron Davis now receives funding only via The Open Medicine Foundation, see link below) p>

https://www.healthrising.org/blog/2017/09/30/three-nih-funded-mecfs-research-centers-controversy/

There’s also been a 2.1 million investment from the US into UK research, looking at immune changes and genetic profiles.

More research is desperately, desperately needed to find the cause and to treat and cure ME.

https://www.huffingtonpost.com/entry/a-disease-that-cries-out-for-research-as-many-suffer_us_59970401e4b033e0fbdec35a

 7.     THE TRAGEDY OF ME OFTEN ENDS IN DEATH AND IS SHROUDED IN SECRECY

People do die from ME, either from organ failure, being left untreated, secondary causes that go unnoticed in the lack of care or from suicide.

Suicide is often the last resort of those left abandoned, without hope, stigmatised and destitute and has little to do with mental health. Many spend their life feeling they may die at any point. http://www.shoutoutaboutme.com/ab out-me/7293/

 There are no official figures for deaths from ME, which in itself speaks of the neglect and disregard for human suffering in ME.

 Carers of deceased ME sufferers have been threatened with action if they publicise biopsy results. Probably because they show the amount of physical suffering, infection, inflammation etc. etc. that is really present in ME. And that show some people die prematurely from ME without treatment. 

http://www.ncf-net.org/forum/Autopsy.htm

 On the same note, ME sufferers are not allowed to give blood, which is strange if I only think I’m ill due to my incorrect beliefs! Surely my blood is fine?  This is likely due to there being much secrecy around outbreaks of ME, with links to possible airborne viruses or serious blood infections. You see, the truth about ME is really known at government level and has been buried for a long, long time in a huge and financially convenient cover up. 

8.     FAMILIES ARE TORN APART

Children with ME have been and still often are placed on child protection registers or removed from their homes due to the biopsychosocial model of ME. They are not believed, not heard and often damaged further, receiving little support as agencies, schools etc. are not taught how seriously ill they are. Parents are led to believe their child is lying or alternatively the parent is blamed for their perceived ill health.

There are hundreds of these cases. Jane Colby of the Tymes Trust explains the current challenges and specific mistreatment of children here: http://www.tymestrust.org/pdfs/childprotectionissues.pdf Adults have died after being forcibly removed, from their homes and sectioned into mental health institutions, where conditions and accusations exacerbate frail ME bodies.

Children have been bullied and abused, thrown into swimming pools to prove they’re faking illness, verbally insulted, hurled out of wheelchairs etc. etc. etc.

http://voicesfromtheshadowsfilm.co.uk/welcome/reflections/

9.     THE PRICE OF ADVOCACY AND THE NEED FOR SUPPORT

Most advocacy is still done by ME sufferers themselves. For example, films like Unrest are funded by ME sufferers, petitions are organized by sufferers and research is often, at least in part, funded by them,

One key example is the Freedom of Information pursuits re the PACE trial which were initially undertaken by an M.E. sufferer, Allem Matthees, now bedridden still months and months later, due to the over exertion of attempting to see truth exposed. That act of advocacy saw much opposition to releasing the flawed data and has only been brought to light because of the initial request of that one courageous man (and followed by many other advocates) , leading to the NICE guidelines now being reviewed.

 These are people desperate to live, trying to survive and be well, heard and no longer mistreated. They are not the abusive militants or the lazy miserable victims, refusing help that are so often depicted. 

They, we, need other voices and other people who understand ME. 

Who see the injustice and speak out and support their efforts.

There are people who have campaigned for years and years and years from their beds; people who have never recovered who keep fighting or who have tragically died in their 30’s and beyond, leaving behind legacies of fighting for their fellow sufferers; sufferers who used every last drop of strength to try to educate and help people and fellow sufferers understand the illness.

 Jodi Bassett (http://www.hfme.org/abouthfme.htm ) and Emily Collinridge (http://www.severeme.info/about-emily.htm) are two such incredibly ill but brave,dedicated advocates, who both died in their 30’s and left behind valuable wealths of information.

10.  IT REALLY IS TIME FOR UNREST

So many thousands of sufferers have lived through everything mentioned above.

And it is unacceptable and horrific to think of future generations suffering in the same way.

Indeed, if this was the case for another serious illness we understood better, it would have caused an outcry long, long ago. But that is historically how illnesses and diseases are treated until they’re understood.

 This lack of recognition, this very suffocating, enforced encroaching of defiant dismissal, leaves patients without access to medical help-a very scary factor when you feel like you are totally obliterated; it leaves them isolated from society; it leaves sufferers so fragile they cannot see friends or tolerate life.

It depletes already sick bodies with piled-on blame, shame, constant explanations, constant appeals for medical help and worry. And it creates an ongoing exhausting, often non-sensical battle to try to somehow live, whilst simultaneously being told they don’t want to get well or didn’t try hard enough.

 There are just Inexpressible amounts of grief, frustration, sorrow, loneliness and desperation in dealing with ME.

It will be a marvellous day when decades of advocacy taken on by ME sufferers themselves sparks a change; when it is recognised and treated so patients no longer must live through what is rightly called abuse and neglect. 

When sufferers of ME can just use their little energy to just get well rather than fight for care because others have been exposed to the truth and fight on their behalf. 

I think there is momentum right now to see this injustice smashed apart. But it still needs lots of information, educating and support. 

 Thanks for reading and supporting the cause. You can follow my ME ME ME Facebook page for more thoughts, stories and information here: https://m.facebook.com/MEMEMEwords/ And twitter: caro_gblom p>

More information and ways to support can be found here:

http://www.meaction.net/

http://www.meassociation.org.uk/

http://www.tymestrust.org/  (supporting children and their families with ME)

http://www.meresearch.org.uk/

www.investinme.org http://www.omf.ngo“>www.omf.ngo