The Atlantic - Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases - by Ed Yong

Agreed. It’s wild when you look at the funding that HIV gets. I think it’s $28B annually. They get prevention programs, treatment, awareness, research, housing and benefits. We need something on that scale but that would take massive lobbying and political action.

 

The difference between this article and the others like it and the ME Terrorists pieces that flooded the media is the most important thing. If we can get acknowledgement that we have a serious, life changing illness it will open doors that will turn our lives upside down for the better.

It is not enough but after all these years we are finally on the first step.

I am thinking of support for wheelchairs, and help from an OT. Letters to support applications for benefits and NO MORE children being removed forcibly from families.

Workwell have lots of ways to save energy on their website too so we are getting back to the advice I was given in 1984. Do 90% of what you can manage on a bad if you have a good day so that you have energy left over for healing. We need permissions and accommodations to achieve that.

Treatments will be good but until then it will be possible to have supportive care which is a positive move. Even in the 1930s supportive care was what was used to fight infections and it often worked.

 

> but that would take massive lobbying and political action

that is one reason i like the growing alliance.

 

It's a difficult one. I get what you are saying in the context. You have to wonder whether they keep their harmful treatments because it keeps the funding coming in for the course whilst puts off anyone actually continuing with it. There needs to start being funds to ensure patients can (as you see for maternity and other services) claim for harm caused. You know, so the department stops making that their norm because it loses them money and reputation.

I do think that specialists, and patients - ALL of all severities going to specialists, LONG TERM (so they see the crashes and ups and downs over many years) - is the bit that has left us all stuffed. Because there are no clinics that are seeing how the illness progresses and fluctuates - just as you say disinterested one-way therapists handing out leaflets. My issue is said people aren't having to see or be held accountable for downturns or seeing how severe it gets so they talk and believe nonsense.

Accurate prognosis information needs someone to see the people with the condition not a cherry-picked defined 'framing'. And we've got a dumping pot with no one seeing patients to get ideas on types or notice patterns that could have helped make for more homogenous groups making research more possible. I agree that in this instance proper observation in-depth with smaller numbers is better than pointless tests in an endless hetergenous group.

Heck we'd be better off just having anyone who isn't brainwashed doing these regular checks - as long as they can remove scales from their eyes and be able to look at how you are rather than see it only through 'you feel better since I help you don't you'. Because the reason people aren't sued is because people are even deprived of that evidence.

If MEA or AfME etc were to do one thing it might be to pilot just these types of monitoring centres in order that the effects of the treatment or neglect of these others places start being annotated. Without treatment/prescription being required there is room potentially for this to be more scientist-based?

If you had RA or lupus you'd want to see a specialist even if they decided your situation at that point couldn't be helped by a medication - because they'd have done that assessment based on knowing the condition, seen the progression of others with it (not just a small section that you never followed-up on) and be able to give you info to allow you to plan your life and conveyed it to the GP so they didn't think based on generic terms.

 

There are so many parasites (inadvertent by closing their eyes to the person they are determined they 'will do good for' whilst also changing their career or whatnot to something that works better for them)... I wonder if that is half the issue/people we are battling with now.

It is so needed for there to be a law regarding 'therapies' - my local fb board had someone advertising their own therapy which sounded very pyramidy and nowhere did it talk of regs or quals or science, just spiel about helping people and generic problems they may have etc. It's wild west preying on people vulnerable in any particular way. You'd think those who were not that dodgy would be desperate to distinguish themselves and get it sorted.

 

Agreed. Whilst you cannot predict luck on things like infections etc. I am absolutely sure that had I been in a medical system that had simply taken the condition seriously and a system that gave me rights I could depend on to ask and get reduced hours or adjustments re: physical things then my life would be vastly different.

I know this because I've had so many 'sliding doors' moments, where bad people with bad attitudes stopped me from not only following my body but castigated and frustrated me and labelled me for it. Each of these, due to poor support and lack of knowledge looking to give good advice to those around me instead of filling them with tropes and misleads, left me coming up fighting but with less options than before - ironically meaning I had worse situations health-wise for jobs than peers with less to offer and better health.

My health position now is more directly about the system crushing it and undermining and enabling the external exacerbation to make me further ill than about the illness itself.
EDITED*as was too rambly:

'false hope' BS and the callousness that was behind all that extinguished the hope and possibility in so many lives. Just as telling someone to think positive about a possible malignant mole would, or telling them to walk on a broken leg and refusing to sign someone off sports or work.

I hope things are changing as you suggest

 

Yesterday the Swedish newspaper Svenska Dagbladet published this article in full, translated into Swedish
Sadly behind a paywall

Postcovid ger ME-sjuka efterlängtat erkännande
Postcovid har visat att virusinfektioner kan vålla kronisk sjukdom, menar Pulitzerprisade vetenskapsjournalisten Ed Yong: ME-sjuka kan nu vara på väg att få ett efterlängtat erkännande.
https://www.svd.se/a/abOvaO/atlantic-postcovid-kan-ge-me-sjuka-efterlangtat-erkannande