The Concept of ME/CFS

Maybe it would be clearer just to add an 'and' - myalgic encephalitis. and chronic ... Then the both follows.

I agree. Everyone should have access to a counsellor. What I see as entirely negative is making this counsellor part of a 'team'. As soon as you have a team you have gossiping about patients (called an MDT meeting) and group think all about their personality failing and god knows what. A good counsellor is someone apart who doesn't natter about you to colleagues. Counsellors are around everywhere, if in short supply on the NHS. You might argue that it would be useful for counsellors to have special knowledge of the needs of ME/CFS patients but I doubt it. Patients and carers can tell them their needs and counsellors tend to take stuff at face value rather than psychologists.

 

Neat!

 

Also very nice!

 

Agreed.

 

I didn't invent the term PEM so I don't know exactly but it presumably refers to more general symptoms than 'fatigue'. In its original sense malaise implies a state that can include nausea, OI and pain (generally widespread muscle pain) yes.

 

I think you are splitting hairs and elsewhere I make it clear that I am not expecting any of these distinctions to be cut and dried. I talk about extensive grey areas and the similar overlap in arthritis that still do not stop us from thinking that something different is going on in a certain group. In arthritis we have found out exactly what different is going on and we still cannot always separate patients into groups without measuring antibodies or whatever.

The idea is to justify a separate syndrome concept - yes a concept - that one day we think will reflect a distinct biological process. I think it is important to go through just how uncertain the PVS relation is - it isn't clear at all - because we are now seeing again papers saying that 50% of people with Long Covid have ME because they tick a few symptom boxes. In other contexts time profiles of symptoms are just as relevant as the symptoms so maybe that is true here. Maybe not.

 

The rub is how do we get that to happen, any ideas? I have started giving talks at Cambridge university to 1st year students but it may take a long time to get to where we need to be.

The other idea is the John Peel centre in Stowmarket a sort of lived experience conference which involves this very subject. Its a long shot but worth a go.... I think

 

PEM for me is very head / brain based if brought on by socializing — an increase in intensity of my baseline symptom of inability to process information (be it visual, reading, TV, talking), and the attempt to process information causing major discomfort . The discomfort is increased light and sound sensitivity, visual disturbances, tinnitus, pressure in head, or headache, increased feeling of illness / flu-like physical weakness / fatigue / brain vibrating to the point where I cannot be anything but prone in a dark quiet room. If I continue to try and push through PEM to stay in a social setting I will feel progressively iller, almost drunk or stoned. A lot of the symptoms feel brain related but general physical flu-like weakness also intensifies (not muscular). When I can get to bed I sometimes crash into a deep 20 minute sleep. Wake unrefreshed still crashed for rest of day and maybe for days.

My symptoms feel like what I imagine a brain injury or concussion are.

PEM after physical activity can involve more OI feeling — like I must get horizontal quickly. Panting as if have physically exerted when I haven’t. The brain symptoms come on too.

 

What would that be exactly? I live in Woodbridge in the summer months and get there off and on in the winter.

 

Well I am rounding up the wagons so to speak, CEOs of Healthwatch, Co production and Commissioning, MPs and councillors with a couple of Charities that have more to do with education, disability and those that are showing Fabrication or inducing illness (FII) has no foundation. Joining all those together is what is needed?

I have no money and can only offer a photo opportunity (I know you are not bothered about that but they will be). It will take some organising and have no idea how I'm going to achieve it, but that has never stopped me before lol

It will connect the professional working with the services and those that live with the condition and I think that is what is needed - understanding and respect?

 

Firstly thank you for this.

I haven't been able to read it all yet, but skimming through the comments, this comment from Wessely set off my internal BS detector alarms. Hasn't this already been deployed by someone else (can't remember where I saw it) as a counterargument to criticism of the PACE trial; if harm has occurred it is not the trial, it's not the treatment, it's the therapist or the patient.

He has stated this before in this defence of PACE by him back in 2015. The PACE Trial for chronic fatigue syndrome (nationalelfservice.net)

and

In other words false illness belief that we have an illness called ME and deconditioning is the reason we deteriorate...

 

That would be far more convincing if there were such a thing. It's not as if PACE featured that, at least outside of a definition that is "trained according to Wessely's beliefs", which is an ideological position. Chiropractors are highly trained in the sense of years of schooling and have good incomes. Means nothing. But ultimately even Wessely used the fact that PACE produced similar results to small cheap trials, in fact pretty much all trials have roughly the same uninterpretable outcomes.

So if any cheap trial with random therapists produces the same outcomes as the very expensive trial he claims is the standard by which to judge, the only way his argument would make sense would be for him to be delusional, his argument ignores inconvenient facts. Which he isn't, leaving the only alternative being that he simply lies because it's good for him. And it has been very good for him to lie a lot, without it he would never have reached the influence and privilege he has.

As you say, this was his agenda. For his self-benefit. It features no principle or cause other than his ideology and self-interest.

 

Apologies for just popping in as not being able to read through the thread.

About the title.

I like to have the phrasing "the Concept of ME/CFS" in the title, also as it could appear still interesting to those who think there is no valid concept.

Just think it needs an addition so that those who generally aren't interested in the discussion on ME/CFS, -- those who I guess are the majority of doctors who appreciate if they just don't have to deal with pwME/CFS -- see there will be some practical suggestions for them in the article that could be of use if they don't easily manage to get rid of us.

So how about something along the lines:

"The Concept of ME/CFS and its implications for delivering health care"?

 

Maybe it's the Special Insight that can't be taught on a course. Or tested in an exam. Or even known by an individual themselves.

Only those with Really Special Insight can ever know whether Special Insight has been achieved.

It's a fair bet people have been pulling this one since before Homo sapiens.

 

I think that defining ME/CFS as a syndrome like this is a great idea, and could help research as well as clinical practice.

If we are talking PVFS (rather than PVF), I'm not sure if it is different from ME/CFS.Mulitple survey studies find around 2/3 of people with ME/CFS report infectious onset (forum thread somewhere). It is closer to 60% (I think) for DecodeME, which uniquely offered a "don't know" answer option to the infectious onset question. And 100% of DecodeME participants reported not only an ME/CFS diagnosis, but also PEM (using a better definition of PEM than provided by the usual option of DSQ).

Of course, there may be many PVFS cases that don't meet ME/CFS criteria. But PVFS seems to be a vague construct with no clear criteria, and primary care diagnosis rates, at least in the UK, vary wildly over time.

I laugh every time I read this.

 

I think I have avoided considering PVFS as a category although no doubt it once was. I agree that it is too vague to be useful. Categories are of course allowed to overlap even by as much as 66%. In rheumatology we have lots of overlapping diagnostic categories that are all useful because they divide patients up different ways for different purposes.

 

I haven’t managed to get through and digest all of the document or posts here yet to give any useful feedback but what I’ve seen so far looks promising and I wanted to pitch in with a quick thank you.

 

Plus not only did he have the power of running some of the trials and picking the therapists but he ran the royal colleges for these professions and had his hand in being able to make decisions on ‘untrained’ being pushed through the system.

I’m not sure his definition of untrained is the same as mine tho - mine involves scientific psychology base, therefore critical thinking, understanding of methods, the basics of how the brain and other things work so you know what to control for and an overview of scandals and themes behind them

I assume his is like Chalder thinking being professor of CBT teaches you more than how to force brainwashing in someone ‘effectively’ when it doesn’t seem to cover whether that ‘what’ harms or helps like the old days of brainwashing experiments. Who knows what they were really trying to achieve tbf