A dangerous model abandoned as NICE seeks to reform care for ME:CFS patients in 2021

The Prologue to Dialogues for a neglected illness
The Prologue explains the current situation affecting patients with myalgic encephalomyelitis and chronic fatigue syndrome
Dialogues for a neglected illness is a website with a collection of videos addressing the challenges of ME/CFS from the perspectives of doctors, researchers, patients and carers.
The project is made by Natalie Boulton and Josh Biggs with a Wellcome Public Engagement Fund Award 2018-21
Explore the website and watch all the videos at www.dialogues-mecfs.co.uk

[@nicokelly6453]

This is such great progress toward making a better future for ME/CFS treatment and I'm so glad it's happening.

[@mischa23406]

Great video....one day we will be free of this my fellow survivers

[@francinebacone1455]

I'm in Canada and am suffering undiagnosed with this right now. Waited 2 years to get into a rehab clinic, now they're trying to push me beyond my energy reserves and "educate" me that my chronic pain/symptoms are simultaneously "real" but "just in my head", while my fatigue and brain fog are ever present but not getting looked at as the main reason for me not being able to exercise or do anything really. What I would give for a long meandering bike ride, an hour of laps in the pool... its assumed I'm not doing these things because I've somehow made myself overly sensitive to pain?!?! Its getting too hard to recover from the commute to meetings and workouts and I have no energy left for anything else. I feel lucky that I'm well enough to sustain getting out of my house for a few hours once or twice a week... but I'm probably going to be kicked out because I'm getting too tired to make it there on time or keep the rest of my life organized. I can tell my increasingly-hard-to-conceal frustration is likely going to result in a conversation about how my "negative attitude" and "faulty beliefs" are "contributing to poor outcomes for (my) condition".😩!! 'Thoughts and prayers', FFS. RRRRGH! This is heartbreaking and emotionally, its making me feel like I'm either crazy- making it up in my head, or god forbid LAZY, or like overall I'm ALL those things and a complete failure if I can't avoid being kicked out of rehab. I'm giving it my all to get some sort of help, but it's not enough. I'm sad. It sucks. I need to rant. Next week I think I'm going to politely refuse to comply while simultaneously refuse to quit. Hopefully they can take feedback and maybe the next ME/CFS or Fibromyalgia client they treat will have it easier and get their actual needs met instead of being penalized or neglected for the symptoms of the illness that are debilitating them. Hopefully I wont have a relapse in between everything. UGH! So frustrated. Hang in there, ME /CFS/ Fibro/undiagnosed/mystery condition people out there! You peeps who can recognize how familiar this struggle is are the ones who keep me going. Dr.s & clinicians (I've yet to meet one who has experience in treating CFS patients) can make me feel crazy but talking to other sick people makes me feel real. Hang in there!

[@MK-co6uf]

Love these videos. Thank you.

[@edwinajesby6985]

Thank you for ….understanding; /

[@penny4174]

These videos are great. The only reservation I have is the music in the background is a bit drippy and distracting. I think they would be more powerful tools in the fight to persuade hcps without it. Maybe also the narrator is too softly spoken. It’s important to have a strong voice that carries and commands attention.

[@ryanneilcarr]

There is 'no such thing' as 'ME/CFS'. It seems to be another name for 'CFS' and a silly name for an undiagnosed, uninvestigated individual. M.E. is the same illness as Enteroviral Encephalomyelitis. Its a (motor neuron illness - neuromuscular disease if had Enteroviral Encephalomyelitis). CFS is the 'lack of energy' people. Its a totally different group of people lol everybody has a different condition to 'ME/CFS' as there is no such thing. The illness they do actually have MISSED.

[@papercup2517]

Thank you for sharing your perspective, Ryan. As you are no doubt aware, the terms have been interchangeable for some time, but, like it or not, ME/CFS is the compromise one used currently by most medical professionals and researchers. It's messy, an umbrella term for what may well be a group of different diseases or related sub-groups of one disease, but almost everyone agrees it's better than 'CFS' - or even worse, 'Chronic Fatigue'- those ridiculous, misleading terms previously forced on us by a few influential psychologists who felt the need to campaign for decades to try to have it classed as psychogenic, and to persist in describing it as if fatigue were its chief, or indeed, only symptom. (As per the Oxford diagnostic criteria, now fully discredited as an in any way adequate description, but useful to the psychologists who could then offer therapies to reduce said idiopathic 'fatigue' with psych-based methods, and then claim to have 'cured' ME or CFS.) Incidentally, I was diagnosed with 'CFS' in Australia in the mid-1990s by a highly experienced specialist physician after a 2-3 hour physical examination, long and detailed questioning about symptoms and patterns (eg PEM), history taking, analysis of blood results, etc. 'CFS' is just what they were calling it at the time in Australia - there was no 'ME', officially. But what he was examining for and diagnosed me with was clearly identical to current ME and ME/CFS definitions - a complex, multisystemic condition with a very long list of neurological and other symptoms - definitely NOT just 'lack of energy'! Hopefully, with vastly increased funding and as biomedical understanding grows, we can find more apt names for the group of conditions and/or its sub-sets. Hopefully then we can all get access at last to suitable treatments and the care we so desperately need to more closely match our particular condition.

[@nicokelly6453]

Just because we don't fully understand the causes of the illness yet doesn't mean there is no illness or that it's all actually something else. Lots of patients are being checked for other diagnoses and are still being found to fit this diagnosis the best. Researchers are also finding some pretty distinctive physiological features in these patients that show there is likely to be a specific illness we have previously not known much about, and that illness is currently being called Myalgic encephalomyelitis or Chronic Fatigue Syndrome. To try and say across the board that everyone must have another known illness they just haven't been tested for when we're talking about millions of patients whose condition has been studied pretty deeply by certain specialists, well, that's rather bad science, mate.

[@ryanneilcarr]

@@nicokelly6453 M.E. should of never been attached to the term to start with. CFS is a misdiagnosis. Having an acute encephalomyelitis is not the same as not having one. Absolutely absurd conflating an unrelated illness defined by fatigue with an acute encephalomyelitis. No resemblance. Fatigue isnt even an essential symptom in M.E.. The biggest piss take of all is stealing the encephalomyelitis term and attaching it to CFS if the individual in question has never had one. The individual in question is a clear liar. Pathological lying. A lying gaslighter of questionable personality. Who lies about having something that doesnt apply? The person is an absolute fruitcake clearly.