I've only now come across this post by Hilda Bastian. I think she puts it beatifully and it's a strong piece. Patients deserve better than this regurgitated nonsense!
Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al
Lou B Lou
Senior Member (Voting Rights)
ICD 10 F.48.0 specifically excludes G93.3.
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hotblack
Senior Member (Voting Rights)
I was thinking about hope recently and wrote this, it probably fits in this thread
The cruelty of saying we could have the thing which we most want if we only wanted it more.
Most of us want the simple, normal things of life far more than any healthy person will ever know or experience. To spend time with friends or family, to walk in the fresh air, to just do the simple everyday things most take for granted.
To then say that we could have it if we thought differently or behaved differently when there is no evidence is not giving hope it is a punishment. It is adding insult to injury. The path of this disease is not in our control. There are no known paths to recovery despite some people spontaneously doing so. Saying otherwise is a cruel deception.
Hope comes from acceptance, understanding and investment to provide the treatments we need. It comes from believing us and in us.
And some of us are lucky to have moments of pleasure and joy! A brief respite from all the shit this disease brings and which the attitudes from others compound. Not everyone is this lucky but I know from my own experiences and from speaking to others just how much joy small things can bring. And how much hope there is, which keeps us all going day by day, in the belief that something better can come. And that brought by others believing us, so little from them can bring so much.
We don’t need others to convince us of their idea of hope. We need others to support us in our hopes.
The cruelty of saying we could have the thing which we most want if we only wanted it more.
Most of us want the simple, normal things of life far more than any healthy person will ever know or experience. To spend time with friends or family, to walk in the fresh air, to just do the simple everyday things most take for granted.
To then say that we could have it if we thought differently or behaved differently when there is no evidence is not giving hope it is a punishment. It is adding insult to injury. The path of this disease is not in our control. There are no known paths to recovery despite some people spontaneously doing so. Saying otherwise is a cruel deception.
Hope comes from acceptance, understanding and investment to provide the treatments we need. It comes from believing us and in us.
And some of us are lucky to have moments of pleasure and joy! A brief respite from all the shit this disease brings and which the attitudes from others compound. Not everyone is this lucky but I know from my own experiences and from speaking to others just how much joy small things can bring. And how much hope there is, which keeps us all going day by day, in the belief that something better can come. And that brought by others believing us, so little from them can bring so much.
We don’t need others to convince us of their idea of hope. We need others to support us in our hopes.
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V.R.T.
Senior Member (Voting Rights)
This is all so true.
It is so nasty that the people who doubtless spend time lobbying against the funding of things like SequenceME which bring real hope to patients go on and on about 'hope'; when what they actually do is falsely convince people they can have their lives back, often leading to people losing more of their lives through deterioration.
The hope that I could recover if I treated MECFS like depression was the most damaging thing anyone has ever given me. The fact that clinicians and OTs are puzzled when I don't want more of the bullshit hope that destroyed my life just shows how disconnected they are from reality.
hotblack
Senior Member (Voting Rights)
Yeah, I even questioned my own understanding but oddly luckily had been through a long period of clinical depression (which I was told by some I wouldn’t ever fully recover from but did!) so could see the differences. I’ve accidentally become more of an expert on both the conditions they confuse then any of them.
The talk of people being more likely to get one if they’ve had the other is perhaps an interesting angle in misdiagnosis or misunderstanding of both conditions (biologically as well as in how they are seen medically). In my mind it shows how little many medical professionals understand ether anyway. Although I was lucky in my GP at the time recognised the difference too. But also, if it really were the case, I think there would be more people able to clearly differentiate the two. Or maybe people do and they’re just not listened to.
V.R.T.
Senior Member (Voting Rights)
I also had clinical depression before MECFS. This was my position for three years - that this was nothing alike (although internally I questioned if I was wrong) until a GP persuaded me otherwise. Which is part of why my distress at my deterioration was so extreme. No amount of therapy or antidepressants could ever undo the psychological damage that did.
Now I think if anything I may have had MECFS since my depression diagnosis, at least in a prodromal form.
I think a lot of people diagnosed with depression probably have a milder or prodromal form of MECFS, to be honest. The doctors were so quick and so confident to diagnose depression and GAD when I was younger. No specialists were involved.
hotblack
Senior Member (Voting Rights)
And so sorry you went through that. The psychological side is something I had more of a problem with as time has gone on, both because I do get low and angry and scared (but it’s usually with the medical and wider services and their failures than anything else) and because of increased attempts to push that sort of ‘treatment’ on me.
hotblack
Senior Member (Voting Rights)
Interesting. Yes it could be. Either misdiagnosis or there may be some shared biological elements, but they seem to me to be very distinct conditions. Just my experiences though.
I had a good decade between my depression/anxiety and ME/CFS when I was out in the world.
V.R.T.
Senior Member (Voting Rights)
Yeah, I had been quite depressed for about a year when I got the symptoms that led to my depression/anxiety diagnosis. Which was part of why doctors and later the psychologist I saw lumped them in together, as well as me and the people around me. I never recovered from them, and a lot of them overlap with MECFS symptoms, though I can't point to any definitive PEM episode.
I definitely have depression, but I am very unclear as to how much of what I experienced before my definite MECFS onset at 26 was linked to depression.
This muddying of the waters by doctors trained to diagnose anxiety at the drop of a hat is really troubling. There is a high chance I spent 7 years before my definite MECFS onset battling mentally against symptoms that were not caused by mental health issues.
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Peter T
Senior Member (Voting Rights)
I was just wondering if this supposed multidisciplinary rehabilitation is in practice for ME/CFS ever multidisciplinary at all.
When I was seen by the Sheffield ME/CFS service, though this was some fifteen years ago, I had several individual sessions with an OT discussing activity management and diary keeping touching on the idea of pacing up, then a course of OT led group sessions, with sessions on specific topics, such as sleep management though I can’t remember much of the course. I seem to recall at the time that this service was solely staffed by OTs and Physios. They had no doctors directly involved, only accepting referrals with a prior consultant diagnosis, which in Sheffield generally meant the infectious diseases team. I was only ever seen by OTs, though presumably if the felt it relevant I could have been seen by a Physio (PT). I am not sure this constitutes‘multidisciplinary’, at best it was ‘bidisiplinary’.
When I was seen by the Sheffield ME/CFS service, though this was some fifteen years ago, I had several individual sessions with an OT discussing activity management and diary keeping touching on the idea of pacing up, then a course of OT led group sessions, with sessions on specific topics, such as sleep management though I can’t remember much of the course. I seem to recall at the time that this service was solely staffed by OTs and Physios. They had no doctors directly involved, only accepting referrals with a prior consultant diagnosis, which in Sheffield generally meant the infectious diseases team. I was only ever seen by OTs, though presumably if the felt it relevant I could have been seen by a Physio (PT). I am not sure this constitutes‘multidisciplinary’, at best it was ‘bidisiplinary’.
rvallee
Senior Member (Voting Rights)
Bubba: "Anyway, like I was sayin', shrimp is the fruit of the sea. You can barbecue it, boil it, broil it, bake it, saute it. Dey's uh, shrimp-kabobs, shrimp creole, shrimp gumbo. Pan fried, deep fried, stir-fried. There's pineapple shrimp, lemon shrimp, coconut shrimp, pepper shrimp, shrimp soup, shrimp stew, shrimp salad, shrimp and potatoes, shrimp burger, shrimp sandwich. That- that's about it."
NelliePledge
Senior Member (Voting Rights)
NelliePledge
Senior Member (Voting Rights)
Kitty
Senior Member (Voting Rights)
My bright moment for today was realising I'd misread that as "You barbecue it, boil it, broil it, bake it, salute it."
Kitty
Senior Member (Voting Rights)
Indeed.
It's hard to imagine them telling the parents of a young person with leukaemia or SMA they could have the thing they most want if only they wanted it more.
Utsikt
Senior Member (Voting Rights)
98 % of those with testicular cancer in Norway survive. I don’t see people shouting at the unfortunate patients that don’t survive «do you know that almost everyone survive this?!» «why do you lie here dying?!».
Even when we have effective treatments for most, we recognise that there is a need to do more work to help the rest. And we don’t blame the patients for not getting better.
Even if their treatments were effective for some (they aren’t), their behaviour towards the people it doesn’t work for is appalling.
Even when we have effective treatments for most, we recognise that there is a need to do more work to help the rest. And we don’t blame the patients for not getting better.
Even if their treatments were effective for some (they aren’t), their behaviour towards the people it doesn’t work for is appalling.
hotblack
Senior Member (Voting Rights)
Exactly. Few other diseases are treated like this. Many are not well understood by the wider public, people often feel awkward talking about things, there have been some conditions like HIV/AIDS in which people have faced stigma or blame and there are many chronic conditions which don’t get the full recognition they deserve. But by and large, the amount of sympathy out there is huge for things which destroy lives to the level severe ME/CFS does. Even if people don’t get their responses right all the time or the support people should really be getting doesn’t fully exist there is a recognition of the impact and a feeling that ‘something should be done’. I still hope that one day we will reach that level of recognition for our condition.
Ironically one of the main things that saved HIV/AIDS from the psychosomatic fate was that they were indisputably dying in horrible and unusual ways.
That is hard to write off to just being a psychosomatic disorder. Though a few did try, and some of those went on to die from AIDS.
Psychosomatics has an unusually powerful and dangerous grip on human thinking.
hotblack
Senior Member (Voting Rights)
Yeah it was more stigma and blame with HIV/AIDS. That continued for a long time and in many parts of the world or in certain communities it still does. An example that no amount of biological evidence necessarily overcomes some of the more unpleasant attitudes people have.