Very Severe ME/CFS

Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.
Patients are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].

Most doctors have had no formal training; many think it’s psychological and some don't even believe in the condition. Misdiagnosis and inappropriate management are common. Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3]. The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].

[dianecarubia]

These images should be on billboards all over the country. The neglect is unacceptable!

[chronicallychic]

Such a terrible disease 🥺 I went from mild to moderate-severe and get scared constantly that I will only get worse. Sending love to everyone struggling with ME 💜

[katrinmurnain]

25 years now .... and still no real help . Thank you for speaking for those of us who can not .

[tamzinmole]

Thank you for highlighting the piight of the very severely affected x

[ingela_injeela]

Thanks for speaking on behalf of those who can't.
God bless you.

[thethmoonofuranus]

I've been bedridden for 13 years and got worse under NHS ME clinic care. At one point I was hospitalised because I couldn't swallow and the Dr told me that many people with ME can do far more than they believe they can 😒 I was also told by a Dr that I was bedridden for attention and liked having carers. I'm so tired of fighting, I don't want to do it anymore, there's no point, nothing is ever done about it

[snowywinterforest]

Thank you so so so so so much for posting these! To hear the truth for once it's absolutely breathtaking! & Refreshing!

Please don't ever stop! I know it must be so hard for you to do, and I'm in awe of you!

Without you, all this information will not be getting out there& victims of M.E would not be able to have their voices heard& this community to not feel alone.

Your amazing like your videos! It's extremely appreciated!

[fairylandful]

Thank you so much for this! There are almost no resources to teach family members about ME, let alone severe ME.

One small suggestion, could you please change the part where you say “many doctors think it’s psychological and some don’t even believe in it” to: “many doctors WRONGLY(or some synonym) think it’s psychological and some don’t even believe in it even though expert doctors and scientists from [insert prestigious institutions like Stanford] know it’s a real physiological disease with X number of papers detailing metabolic, mitochondrial, neurological, immune, etc abnormalities”

Or any variation of that to hit it home that it’s real and most doctors are uninformed when they say it’s psychological.

I just want it to be super clear to family members with no chance of misunderstanding esp since people aren’t good at paying attention. And will think “oh well since most docs think it’s psychological, they are probably more correct”

Thank you so much for all you

[Johnswbigb]

I've been suffering for years now. Don't have formal diagnosis but I know this is what I have. Been to so many doctors and absolutely no help. Dr John K Chia thinks Non-Cytolytic Enterovirus is to blame. He knows how to make a cure but drug companies won't listen neither will his colleagues. Most doctors think it's psychological. So sad! I wish I could see him but he is 2500 miles from me with a long waiting list. I've gotten so sick can't really make it to any doctor appointment. I want to contribute to finding the cause and cure anyway I can. We all need to work together. How can we do that? John

[baileystruss]

I am severe. This is a problem with overestimated innate immune system and likely IgG auto antibodies. The immune dysregulation hijacks the Krebs cycle and we stay in anaerobic energy cycle.

[donna]

I’ve got moderate level fatigue due to autoimmune issues and it’s debilitating enough.

[yaku]

Aminosäuren, Vitamine, Mineralstoffe, Kalorienzufuhr, Spurenelemente alle im obersten Bereich?
❤

[snowywinterforest]

Keep away from medical world they are not your friends in this.. you must rest pace .. People are incapable of thinking outside the box, and others cannot grasp that anyone can be this ill.. unfortunately it seems the nicest people are the 1s that suffer. If only others can swap that do not care

[freakattack]

It is a complex psychosomatic condition which will get better in time for sure.