What do we mean by a diagnosis like ME/CFS?

[Tilly]

Because nobody has found any.
Inflammation shows. With MRI you can see inflammation in any part of the body and in ME/CFS there isn't any. Even in the brain people are studying MRIs in great detail and the one thing they are not seeing is inflammation.

That does not mean there is none, it just means we have not perfected a test clear enough or understood what we need to understand yet! That is important to recognise and accept but I feel we maybe close

Why we must accept we see the signs but have no test is when you have a large amount of patients explaining brain fog, instead of looking for neurodivergent issues and stating autistic (BACME approach, who now run Bath) which is inappropriate with regards to ME for many; due to the fact they only become or can be diagnosed as autistic when in PEM! PEM and brain fog cause so many issues with EHCPs and safeguarding.

You cant defiantly rule it in maybe, but you must not rule it out. Finding the point of when it happens in the PEM cycle is very important for safeguarding the young people and everyone. Carla has demonstrated how important this is.

 

[Jonathan Edwards]

You cant defiantly rule it in maybe, but you must not rule it out.

We can rule it out. Younger is talking about glial activation which, on its own, isn't inflammation. It's just glial activation, and the consensus now is that nobody has found any of that either reliably.

Inflammation is defined in terms of change in blood vessels that increase flow and produce excess water in the tissue as the first step. Rubor, dolor, calor. In chronic inflammation the predominance of water is replaced by bulk of white cells in the tissue but there are still changes in blood flow. We now have tests like MRI that show the slightest trace of this process.

Saying we have just not found it yet is a bit like saying we might not have found a bruise because we haven't got a strong enough microscope to see it. Bruise ceases to mean anything at that scale.

Whatever is wrong simply isn't inflammation because what we define as inflammation we can see, even inside, and it isn't there. People continue to insist that ME/CFS is inflammatory but this is highly misleading for patients and it simply isn't the case.

Why do people want there to be inflammation? It comes from the spurious link to Acheson's idea of 'myalgic encephalomyelitis' which was never anything to do with ME/CFS other than as one of many possible triggers.

I trained in the main UK centre of inflammation research under Wallace Spector and Derek Willoughby at Bart's in the 1980s. I then spent my life dissecting inflammatory mechanisms. None of these other researchers have the basic pathology training.

ME/CFS isn't inflammation.

 

[Trish]

Why we must accept we see the signs but have no test is when you have a large amount of patients explaining brain fog, instead of looking for neurodivergent issues and stating autistic (BACME approach, who now run Bath) which is inappropriate with regards to ME for many; due to the fact they only become or can be diagnosed as autistic when in PEM! PEM and brain fog cause so many issues with EHCPs and safeguarding.

I think we need to avoid confusing two issues.

Yes, it's accurate to say pwME experience brain fog.

But no, that doesn't mean the cause of that brain fog is inflammation. We don't know the biological basis of brain fog.

There is a risk if we go to the doctor and say we have brain inflammation they will assume we've been reading the internet and are imagining things.

On the other hand if we go to the doctor and say we can't concentrate, remember, read more than a page before losing track, drive safely because we react too slowly - those are symptoms they should take seriously.

I'm very concerned to hear the clinics are now diagnosing PEM and brain fog as neurodivergence. That's weird.

 

[Jonathan Edwards]

On the other hand if we go to the doctor and say we can't concentrate, remember, read more than a page before losing track, drive safely because we react too slowly - those are symptoms they should take seriously.

Agreed. I strongly suspect that safeguarding issues are triggered by patients and carers talking about brain fog or PEM, when what they mean are these things above. Brain fog and PEM are not useful things to tell a doctor because the doctor has no idea what the patient means by them. If they say they cannot concentrate that is understood.

 

[Tilly]

That is my sense of it. PEM is the consequence of whatever is driving the problems underneath.

In the same way as somebody who has been stabbed and is bleeding onto the kitchen floor is not afflicted by blood on the kitchen floor syndrome. They are afflicted by a stab wound causing external blood loss, and the surface they are bleeding onto just happens to be a kitchen floor, but could just as easily be a concrete driveway or a lawn, or they could be bleeding into a bath or pool, etc. The critical fact is that they are bleeding, not where the blood is ending up once it leaves their body.

I get your point I think, but I disagree with it; mostly because if you do not recognise the blood loss you end up in a spiral of decline an inability to carry on with activity and you loose more blood. The wound may heal with no intervention and you may never find it if that happens but if you continue to push/ or stretch the area where the stab happened it will never heal

The analogy does not work that well because no one is left bleeding without stopping the blood flow.... Just thinking about this, if your don't stop the blood loss/kept in a PEM state it ends up killing you. Then you have to ask yourself was it the stab wound or the loss of blood?

What we see is PEM, we may have to find the wound, maybe, but it may just be that if your stay out of PEM you recover, so would that not be cause? Do we find that young people that are correctly diagnosed given the appropriate advice on PEM recover? Remember we have had no research into resting recovery but we do know if PEM is understood and pacing is used, people can stable their severity at the very least. So on that basis, we must look at PEM as a contributing factor, if not cause as we have nothing else? We should learn to measure PEM, that is to say by the visable app

 

[Tilly]

I think we need to avoid confusing two issues.

Yes, it's accurate to say pwME experience brain fog.

But no, that doesn't mean the cause of that brain fog is inflammation. We don't know the biological basis of brain fog.

There is a risk if we go to the doctor and say we have brain inflammation they will assume we've been reading the internet and are imagining things.

On the other hand if we go to the doctor and say we can't concentrate, remember, read more than a page before losing track, drive safely because we react too slowly - those are symptoms they should take seriously.

I'm very concerned to hear the clinics are now diagnosing PEM and brain fog as neurodivergence. That's weird.

It is Dr Vickers go to. He works in Cambridge and I have come across a few families that have been told their child is autistic but the families did not understand the diagnosis/reasoning. Understanding PEM/Brainfog is important because when out of PEM they do not appear autistic and when in other settings the diagnosis is taken away, leaving everyone confused and disgruntled. It happens and LA love it!

I don't think any patient should/cant say they have inflammation, but I do think we need medical professionals and especially drs to be aware of the possibility, so that confusion between ME and autism does not grow. It is hard enough as it is explaining the issues young people face without adding to it. We also need to support the research in this field and look at the progress.

 

[Kitty]

We should learn to measure PEM, that is to say by the visable app

That might be possible if PEM were an entity, a measurable thing, but is it? Or is it just a change of symptoms?

Yesterday I had a headache all day. The trigger for it was the shingles vaccination I'd had the day before. But that headache's not a thing that could be found or measured. It was a normal and predictable response to an event. As far I understand it (which I admit isn't very far), PEM is the same.

 

[Tilly]

Agreed. I strongly suspect that safeguarding issues are triggered by patients and carers talking about brain fog or PEM, when what they mean are these things above. Brain fog and PEM are not useful things to tell a doctor because the doctor has no idea what the patient means by them. If they say they cannot concentrate that is understood.

That is not the fault of the patient and it needs to be clearly understood that hiding or masking is not acceptable. Every dr should understand and accept PEM and brain fog, without exception. The reason we have such a hard time is because we do not speak up and tell the lived experence as it is and it has to stop.

You cannot look for a needle in a haystack if you do not describe the needle in the first place. Some Drs have found the needle by the point of it and that is no way to find out. Once they have felt the point of the needle they are then ridiculed and dismissed. If they cant get better understanding and stop the foolishness then what chance does a child have. Advocates from all walks of life have the responsibility and duty to stand up and speak the truth, their truth is where we find what we are looking for.

 

[Kitty]

Understanding PEM/Brainfog is important because when out of PEM they do not appear autistic and when in other settings the diagnosis is taken away, leaving everyone confused and disgruntled.

That really is shocking. Autism doesn't resemble brain fog, and no competent diagnostician could confuse them.

 

[EndME]

Remember we have had no research into resting recovery but we do know if PEM is understood and pacing is used, people can stable their severity at the very least.So on that basis, we must look at PEM as a contributing factor, if not cause as we have nothing else?

As far as I'm aware this is not the case. Pacing is a means to hopefully avoid getting worse and living a life as good as possible, it is neither been shown to be curative, nor a treatment nor can it definitely prevent worsening. It is a means to manage a horrible situation as well as possible without any evidence to suggest anything else. That is to say even if you pace you might still decline. It is just that cumulative evidence from various studies have shown that GET (& CBT) has no meaningful efficacy and many people report worsening due to GET. We have no evidence of the opposite and I think there have been many counterexamples to suggest the opposite is not the case. I think there might even data from different GET studies that used pacing as a control arm, that might show that pacing does not necessarily result in stabilisation.

 

[MeSci]

ME/CFS isn't inflammation.

What then is the swelling I have under my chin, which at the beginning came and went but is now permanent? My weight is normal but the swelling is very obvious. Sometimes there is hardness on both sides.

 

[Ash]

Agreed. I strongly suspect that safeguarding issues are triggered by patients and carers talking about brain fog or PEM, when what they mean are these things above. Brain fog and PEM are not useful things to tell a doctor because the doctor has no idea what the patient means by them. If they say they cannot concentrate that is understood.

I don’t think safeguarding proceedings could reasonably be said to be triggered by patients or carers using the wrong terminology. Especially not this particular terminology.

Brain fog is the word that doctors nurses OT’s and social workers have used for my symptoms. I have never once used it with them. I assume that they liked it because it was quite cosy sounding and indicated dreamland or vague out of it ness. Rather than the cold hard facts of forgetting to drink forgetting your best friend’s name or losing the ability to read write or to count etc.

I’ve also never sought to discuss ‘PEM’ using the term. I told professionals that I became more unwell after doing more stuff, sometimes, if relevant. But sometimes they’ve brought up PEM with me, to see if I experience this. Plus, obviously, I have to list it on my diagnosis descriptions, always with sentence to say what it refers to. So that’s unavoidable.

I fully agree that patients need to have some help understanding what’s bullshit and what’s plausible, and in sharpening up our language and terminology around medical professionals.

But mis/understanding and sloppy language are so common as to be near universal. Doctors themselves acknowledge this. In fact they’re notorious for this acknowledgment. Near constantly they loudly complain and moan about their patients being ignorant peasants who don’t possess the slightest grasp of biology and disease.

But doctors accept this reality, and feel smug about it too. Just the annoying and unfortunate way of things. Oh well good job we’re so clever and can make up for our patients shortcomings. They don’t usually go all child snatcher about it.

 

[Mij]

I have noticed over the years of talking to many is that eating a meal can push a person into a deeper PEM state. It is not just the activity of eating but the unseen digestion that is important to recognise.

I have no appetite during PEM and I'm normally a big eater in general. It feels similar to having the flu or Covid when my appetite was zero.

Eating doesn't push me into PEM though.

 

[Jonathan Edwards]

What then is the swelling I have under my chin, which at the beginning came and went but is now permanent? My weight is normal but the swelling is very obvious. Sometimes there is hardness on both sides.

I don't know but I don't see why it should have anything to do with ME/CFS? There is no general observation of a link between ME/CFS and swellings under the chin. As has been said many times before, it can be a mistake to assume everything somehow relates to ME/CFS.

 

[Jonathan Edwards]

That is not the fault of the patient and it needs to be clearly understood that hiding or masking is not acceptable. Every dr should understand and accept PEM and brain fog, without exception. The reason we have such a hard time is because we do not speak up and tell the lived experence as it is and it has to stop.

I absolutely agree and hopefully that will be clear when the video of my recent seminar presentation is made generally available. The fault is with 'ME specialists' who lead patients to believe that these terms mean something specific and understood. They are just popular terms for symptom patterns. PEM is something doctors have adopted as a useful concept of a symptom pattern, but nothing more than that. Brain fog is more a colloquial term although I suspect doctors often use it in talking to patients to put across that other people decribe similar difficulties concentrating. We know nothing about what is behind these and certainly not inflammation.

For my patients with rheumatoid arthritis I would sometimes explain to them that the pain and swelling of their hands is what we call synovitis. But I would never want rheumatoid patients to describe to other doctors that they were having trouble with their synovitis. They should say that they have more pain or more swelling. It is up to the doctor to interpret that. It might not be synovitis. Similarly, someone with ME/CFS should not say to a doctor or nurse that they are having PEM but that they have more pain or are finding it harder to get up or finding sounds more distressing.

As soon as these words take on a life of their own, miscommunication becomes the norm.

 

[MeSci]

I don't know but I don't see why it should have anything to do with ME/CFS? There is no general observation of a link between ME/CFS and swellings under the chin. As has been said many times before, it can be a mistake to assume everything somehow relates to ME/CFS.

I realise that it may not be connected, but it didn't appear until I had ME/CFS, ditto the swellings behind my knees.

 

[Jonathan Edwards]

I don’t think safeguarding proceedings could reasonably be said to be triggered by patients or carers using the wrong terminology. Especially not this particular terminology.

Brain fog is the word that doctors nurses OT’s and social workers have used for my symptoms. I have never once used it with them.

This relates to my last post. We agree that terms like PEM and brain fog tend to be things, like synovitis, or subluxation, that doctors and nurses tend to use where most patients understand that they will be better understood if they simply use their own words.

But some patients and carers do use these terms a lot. You see it on television, in the papers. The reason I raised this is that I sit in a rather strange position in between colleagues with all sorts of different views. Some of the colleagues with a BACME type of approach make it clear to me that they see use of these terms as signals that patients have unhelpful beliefs. That makes sense to me because patients get told all sorts of unhelpful things like that their heads are loose on their necks or that they have mast cell activation syndrome. On the paediatric side I am pretty sure that this impacts on conflicts with carers and parents and that leads on to safeguarding issues.

I am not condoning the behaviour of the BACME-style physicians but I think responsibility for the mess over safeguarding is shared between those who provide unsubstantiated 'advice' and those who see that as part of the patient's problem.

 

[duncan]

But some patients and carers do use these terms a lot.

I cannot speak for most pwME, of course, but I use terms like brain fog because I know most doctors would not understand if I went into specifics, or would misconstrue. It is the medical profession's inability to stay abreast of the patient experience, or indifference to doing so, that I think is the primary culprit much of the time. I use such terms because the "professionals" don't know better.

I appreciate that patients must try to help clinicians understand, but in all candor, the clinician arrogance factor usually dooms that process. I've experienced that hurdle first hand among three completely different conditions that are largely misunderstood.

 

[Creekside]

What we see is PEM, we may have to find the wound, maybe, but it may just be that if your stay out of PEM you recover, so would that not be cause?

I've been PEM-free for around 5 years now. My other ME symptoms remain, so no, staying out of PEM does not lead to recovery from ME.

 

[Jonathan Edwards]

I cannot speak for most pwME, of course, but I use terms like brain fog because I know most doctors would not understand if I went into specifics, or would misconstrue.

But I do not understand that. We have no idea what significance 'brain fog' has over and above the symptoms themselves. There is nothing to 'construe' either rightly or wrongly. I have probably listen to more people describe what they call brain fog here than almost any other physician but I have no idea what you mean by it just from the words. There is no guarantee that your illness is the same as anyone else's here in terms of causation and implications for prognosis and treatment (when there is one) so reducing everything to these prepackaged terms is bound to mean we miss out what is going on in individuals.

Physicians can be abreast of patients' experience if the patients describe it in their own words. They are going to be much less abreast if all they get are codewords.