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

[Creekside]

If we look at PEM, as an inability to produce energy on demand or sustain energy,

I definitely don't look at PEM that way, because my PEM didn't reduce my ability to physically exert myself. Even during severe PEM, I could still dig many wheelbarrows of soil if I needed to. I simply didn't feel like doing that, because of PEM's increase in those flu-like symptoms that make us want to crawl into bed until it passes.

No, we don't know what "energy" is in terms of what people experience. We (I assume) have a good understanding of the role of ATP in muscle contractions and thus physical (and thermal) power generation, but that's not the same as feeling energetic or unenergetic. Those feelings involve neural firings, and probably vary a lot between individuals, so it's not something that's measurable at this time. So, saying that ME causes a "lack of energy" doesn't actually have much meaning from a physical perspective. We simply don't know why we feel that way.

If you are using energy to listen to music say, you have no energy to digest food,

No, terrible analogy. ATP is generated locally, so your brain cells aren't sharing resources with your guts, unless your whole body is severely depleted of glucose and fatty acids and whichever proteins might be used as fuel by mitochondria, and that is not seen in PWME. The cells likewise need oxygen, but AFAIK brain oxygen isn't seen to drop noticeably if you're digesting a Big Mac. Feeling lethargic after a big meal has other reasons (no, it's not tryptophan).

 

[duncan]

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.

Agreed. Yet I have to worry about stepping on a doctor's or nurse's toes most times I try to correct a misguided notion. You may not understand it, but neither did I the many times when I naively first tried to enlighten a professional. It's just a reality.

We can parse down on symptom descriptions and definitions - and debate and refine them - on forums such as this, or perhaps to a handful of extraordinary clinicians and researchers, but in the theatre of actual practice there's a pecking order. Patients are on the wrong end of that order - or at least such has been my experience over the last quarter century +.

 

[Tara Green]

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've had exactly the same pattern. Initially it flared up. For over a year it just stayed up, but only on my right side. It has been mildly concerning because it is hard and felt about the shape of an egg. My husband was very concerned when he felt it. It was impacting my jawline. Whilst it did still go up and down a bit which I took as a good sign, it wasn't like before where it went away completely with bouts of flare ups. The Nurse or Dr was not interested in it. The Nurse looked into my throat and said she couldn't see it (lol), the Dr never bothered feeling for it or looking down my throat.

I tested a few months ago my iodine levels and they were at 35. So low. Minimum it should be is 100. The NHS refuse to test for iodine deficiency as apparently we are all fine. I am again trying iodine supplementation in a spray bottle. (first time I had a bad crash) The hardness is softening. The thing is definitely going down a lot more and more like the olden days of just a swollen gland now.

I think the iodine has had a softening effect on it. I have also been in bed a lot resting. I'm also patching with coq10, magnesium, b12, iron, and on this trial of nicotine patches - can only get that up to 3.5mg patch or else I crash (husband fine on 14mg and doesn't have M.E.). So there is that too and no real way to know, but I feel it's the iodine that's done the trick. I'm having some sort of result from the nicotine, so is my husband who has LC. It's funny as we have never smoked.

I just mention this in passing in case it is of any use.

 

[Tara Green]

I don't know if this has been mentioned but menopausal brain fog is very different to M.E. brain fog. I suspect the difference is a hormonal change versus inflammation/lack of blood circulation/lymph drainage in the brain. I can't think how to put it in words on how though but they are both debilitating and very distinct. I'm going through it now and it's been horiffic at times. Again, no support.

It must be very frustrating listening to patients talk like this, without precision or clarity.

 

[Mij]

Both physical and cognitive energy depletion in ME/PEM is distinctively different than menopause energy. Pacing makes no difference in menopause.

 

[AliceLily]

I just edited my last post on page 4 of this thread. I had used ' real trouble with the brain' which I should not have used. I have deleted it from the post. I couldn't find the expression I wanted at the time. This is something I have to be careful with and try to sit for a while with my posts before posting.

 

[Ash]

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.

My argument wasn’t that patients don’t use those particular terms. Or many others too. It’s that patients in general with many horrible diseases including cancers will subscribe to ‘unhelpful beliefs’ and the wrong kind of terminology.

I have no doubt that BACME and others on their side of the fence along with those influenced by them perceive unhelpful beliefs in patients. Rightly and wrongly.

But seeing non medical patients believe some stuff that you as a medical professional don’t believe is normal. Completely normal. It certainly doesn’t have to lead on to you as the medical professional also believing-unhelpfully I might add- that these patients have not only unhelpful beliefs about their illness but that their whole illness itself consists of nothing but an overblown unhelpful belief.

Now I am sure that many work a day doctors and researchers on the periphery of the subject could well suffer from confirmation bias of a type that mean they simply see a person, a patient having one ‘unhelpful belief’-although I think we could also perhaps unpack whether what most of the stuff you and your colleagues might see as incorrect on patients part really constitutes belief or more misunderstanding due to relative education levels- and jump immediately to the conclusion that if their patients are wrong about this then they must of course be wrong about everything. Everything.

But even if so there has to be another erroneous leap made. They’ve got to also assume that being wrong about stuff means being healthy. Somehow.

But not so heathy that their own or colleagues meddling and unfavourable character judgments won’t be needed to optimise that health.

It’s completely unscientific of these professionals to allow themselves to take this pathway.

It’s also completely irrational to expect sick people to be rational cool calm and detached about their own illness. This is understood by most people. That certain medical professionals are choosing not to understand this, in regard to certain patient groups in particular is unfortunate.

But we do know that oppression exists. That dominant groups abuse their power over the more vulnerable. Rarely do the dominant groups not manage to find some fig leaf of logic to hide behind when explaining why some are suffering under them.

Besides which there would be absolutely no need for patients to be grubbing and in the dirt looking for something to eat if they were allowed to sit at the table and eat. These researchers and clinicians have staved the patients, directly literally and otherwise, now blame these patients for eating food that isn’t really food.

I understand that you share the frustration with your colleagues over patients beliefs or words or lack of education. Surely it would be a helpful self-defence tool if more of us were better informed. But to place blame on patients for their predicament or coping mechanisms isn’t justified. It’s also adding insult to injury.

When people are engaged in prejudiced thinking regarding others usually they, we, earnestly feel like this is justified. Based upon sound reasoning and reasonable expectations. That doesn’t mean that it is.


Edit:typos

 

[svetoslav80]

I just want to say that I went through no-PEM to PEM to (again) no-PEM phases in the course of my illness. Currently my fatigue is very bad but (fortunately) I don't experience PEM. Food for thought whether PEM must be included as a requirement for diagnosis of CFS.

 

[Kitty]

I suggest that you read up upon the diagnosis.

It's the diagnostic process itself where the comparison with brain fog would fall apart. In the case of me and other family members, it was done over time. There were several assessments conducted by two specialists using different approaches, who had to agree on whether an autism a diagnosis was appropriate or not.

They were looking in detail for autism-like patterns and histories, which are different to brain fog-like ones. I wasn't the only available witness to mine, and that was even more the case for those diagnosed as young children. They had professionals who could feed in to the process, rather than just parents or siblings.

It doesn't sound as if the doctor @Tilly described is even involving others in their diagnostic process. It's unusual for people to have an autism diagnosis simply removed without a full reassessment. Not unless there was a strong suspicion the original diagnostician was seeing what s/he wanted to see, or wasn't considered properly competent to make it.

If children and young people (and their families) are having to put up with that because of one doctor, it's shocking to the point where that person's professional standards ought to be investigated.

 

[Jonathan Edwards]

But seeing non medical patients believe some stuff that you as a medical professional don’t believe is normal. Completely normal. It certainly doesn’t have to lead on to you as the medical professional also believing-unhelpfully I might add- that these patients have not only unhelpful beliefs about their illness but that their whole illness itself consists of nothing but an overblown unhelpful belief.

Absolutely, I agree.

I am simply saying that in the fraught context of ME/CFS and the people who have decided it is their business to treat it that using terms like PEM to mean more than just a pattern of symptoms risks aggravating the situation, including a risk of raising the issue of safeguarding of minors.

It is what happens and it is largely the fault of the BACME and BPS crowds but it is also in part the fault of physicians who put about ideas that in the eyes of patients and carers 'prove' ME/CFS is physical but in the eyes of the people who need persuading, do the opposite.

 

[duncan]

It is what happens and it is largely the fault of the BACME and BPS crowds but it is also in part the fault of physicians who put about ideas that in the eyes of patients and carers 'prove' ME/CFS is physical but in the eyes of the people who need persuading, do the opposite.

Imo, this is a very dangerous declaration.

I would suggest the eyes of most of the people who need persuading are of the political sort. Doctors typically trail behind, except for the few trailblazers that first have to endure cross burning..

 

[Trish]

I definitely don't look at PEM that way, because my PEM didn't reduce my ability to physically exert myself. Even during severe PEM, I could still dig many wheelbarrows of soil if I needed to. I simply didn't feel like doing that, because of PEM's increase in those flu-like symptoms that make us want to crawl into bed until it passes.

I don't think I've come across anyone else who describes PEM as you do. Of course I respect your diagnosis and description of your symptoms, I just think people should be aware that most people's descriptions of PEM, or a crash, include major reduction in the ability to function, not just not wanting to function.

 

[Snow Leopard]

We certainly want to know what causes PEM but at the moment we have no idea at all. Until we get a clue from something like DecodeME I think we are pretty stuck because all the tests for causal paths people can think of come out normal.

It is not just DecodeME that gives us clues.

I think PEM is woefully undercharacterised. The overall symptomatic patterns (eg pain associated with fatigue, exacerbation of OI or POTS, headaches etc) and durations is not always consistent, it varies based on task and duration - whether cognitive activity, emotional or motor tasks AND it varies based on whether large or small muscle groups are used. The adductor pollicis probably cannot induce PEM (and researchers who focus on this muscle in chronic fatigue studies don't understand what they are doing).

All of this should provide additional clues, if someone was to look closely.

Aside from all of that, additional clues can be gained from other medical conditions that also cause similar PEM patterns, such as certain neurological/post neurological conditions. This is something that seems to be overlooked by physicians (and almost entirely overlooked by ME/CFS scientists) because the see symptoms caused by those conditions as a either a result of the disease, or blamed on psychological factors, but rarely are any parallels drawn with ME/CFS, (unless the neurologist/GP doesn't believe the disease was the cause of the symptoms and slaps on an ME/CFS diagnosis).

 

[Tilly]

Absolutely, I agree.

I am simply saying that in the fraught context of ME/CFS and the people who have decided it is their business to treat it that using terms like PEM to mean more than just a pattern of symptoms risks aggravating the situation, including a risk of raising the issue of safeguarding of minors.

It is what happens and it is largely the fault of the BACME and BPS crowds but it is also in part the fault of physicians who put about ideas that in the eyes of patients and carers 'prove' ME/CFS is physical but in the eyes of the people who need persuading, do the opposite.

You mean like this paper? Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that

We have to remember the science and understanding that it supports the idea of PEM. Those that are left caring on their young people are abandoned as the mothers. They recognise their young person is very sick every time they have a shower or try to get to school.

OK so lets look at a for instance a lived experence that thousands have gone through, that is a common happening in everyday life. I will start from the beginning and before diagnosis and I will use my experence of listening, helping and supporting over the las 10 years.

What questions need to be asked NOW because over decades no one has learnt the lessons of those that have gone before? Misdiagnosis that clumping everything under ME/MUS/FND.


Young Person say 14 (its a difficult age and is a common age we see)

Had a flu like virus seemed to recover and then took a down turn and was then slow to recover from that, its been about 12 weeks since the virus, which was not too bad just the normal everyday flu thing.

The reason for the GP visit:

Felt dizzy after a shower
came up in rashes at odd times
complained of not being able to catch their breath under the water
spike head aches
found it difficult to get dressed
had gut issues
would collapse at weekends.

What would a doctor look for or question ? Mostly they would say they were typical teenagers and dismiss the parents concerns that something; they could not put their finger on, was wrong.

Two weeks go by and the problems are getting worse. The young person has been sent home from school a few times and what was once a energetic sports person, who was into swimming was staying more in their bedroom. Getting more detentions due to not handing in home work on time and not concentrating. This is uncharacteristic and pastoral care is put in place, as the school know something is wrong and are wondering if that something is home life bullying internet.

Parents are now frustrated with the child because, what was once a grade A student, full of life is now struggling. They are also frustrated with the DR as they do not seem to take the drastic change in their young person seriously. Parents are told that this is normal and nothing is wrong (this is based on opinion and bias thinking), however they will run blood tests.

The young person now has clear "chicken skin rash" over arms and chest.
Unable to get up in the mornings
strange markings
Constantly sick
Glands are visible
Headaches are more prominent
Wearing headphones a lot of the time
not responding to questions and looking distant
not sleeping
School is concerned, so now on a part time timetable. They are trying afternoons to see if this helps

14 weeks in and the young person is less able to do normal activities.

From the last appointment to see GP the young person has not recovered and has taken to laying down more/most of the time. Parents are now concerned. it is now 16 weeks

Phone consultation with GP about the normal blood tests, some are just within the normal range (remember none of the tests are appropriate for ME). Doctor diagnoses CFS and passes on to OT and Psychiatrist (BACME) as a multidisciplinary team.

What should have been done? What needs to be done?

No learning gets done because no one asks the right questions

The saddest thing of all, those that understand the cascade of issues cause by ME and PEM do not get known or supported because we do not ask the right questions and we do not learn of the recoveries from good practice or accept the harm of not treating what is staring us in the face.

 

[Tilly]

It's the diagnostic process itself where the comparison with brain fog would fall apart. In the case of me and other family members, it was done over time. There were several assessments conducted by two specialists using different approaches, who had to agree on whether an autism a diagnosis was appropriate or not.

They were looking in detail for autism-like patterns and histories, which are different to brain fog-like ones. I wasn't the only available witness to mine, and that was even more the case for those diagnosed as young children. They had professionals who could feed in to the process, rather than just parents or siblings.

It doesn't sound as if the doctor @Tilly described is even involving others in their diagnostic process. It's unusual for people to have an autism diagnosis simply removed without a full reassessment. Not unless there was a strong suspicion the original diagnostician was seeing what s/he wanted to see, or wasn't considered properly competent to make it.

If children and young people (and their families) are having to put up with that because of one doctor, it's shocking to the point where that person's professional standards ought to be investigated.

The issue comes when it is generally accepted that anyone can make a diagnosis, I kid you not. There is a process of challenging a diagnosis and for taking it away but it is not easy to do because very few understand the process or reasons for doing so. However, if you look through enough medical notes you will see it can be fluid and unfathomable.

The other issue is that clinical Social Workers are licensed to diagnose, treat and prevent mental illness. Though some do take it that to mean all Social Workers can and that autistic people have behavioural and mental health, rather than they are neurodivergent.

 

[Jonathan Edwards]

All of this should provide additional clues, if someone was to look closely.

I agree.

 

[Jonathan Edwards]

The saddest thing of all, those that understand the cascade of issues cause by ME and PEM do not get known or supported because we do not ask the right questions and we do not learn of the recoveries from good practice or accept the harm of not treating what is staring us in the face.

I have not yet met anyone who understands anything about the cascade of causes in ME/CFS. All I find are people who think they know but have no reliable evidence for that.

People here are trying very hard to unpick these questions. But I think the first question to ask is whether we know anything at all. I think the answer is broadly, no.

 

[Tilly]

I definitely don't look at PEM that way, because my PEM didn't reduce my ability to physically exert myself. Even during severe PEM, I could still dig many wheelbarrows of soil if I needed to. I simply didn't feel like doing that, because of PEM's increase in those flu-like symptoms that make us want to crawl into bed until it passes.

No, we don't know what "energy" is in terms of what people experience. We (I assume) have a good understanding of the role of ATP in muscle contractions and thus physical (and thermal) power generation, but that's not the same as feeling energetic or unenergetic. Those feelings involve neural firings, and probably vary a lot between individuals, so it's not something that's measurable at this time. So, saying that ME causes a "lack of energy" doesn't actually have much meaning from a physical perspective. We simply don't know why we feel that way.


No, terrible analogy. ATP is generated locally, so your brain cells aren't sharing resources with your guts, unless your whole body is severely depleted of glucose and fatty acids and whichever proteins might be used as fuel by mitochondria, and that is not seen in PWME. The cells likewise need oxygen, but AFAIK brain oxygen isn't seen to drop noticeably if you're digesting a Big Mac. Feeling lethargic after a big meal has other reasons (no, it's not tryptophan).

I feel it is more complicated than just ATP

Your first sentence in a way proves my point. So if your body is fighting flu like something then you would need energy for that? Or is the flue like something the hibernating state that has been explained before? So go to bed so that you can do just that give time for your body.

The fact you kept going is possibly your bodies ability to use those reserves and not fail completely, where another person would fail. We are all individuals and none of use our systems in exactly the same way. If you have Celiac say and do not have the same diet you would be different to someone who does not. The other issue if you have not been diagnosed with celiac disease and are still eating wheat you would also present differently. Not taking these known facts into the picture confuses our understanding ?

 

[yME]

I also think this is important - what I call the ladders of the snakes and ladders

A slight update was that my full blood count taken on the day showed absolutely normal as usual but slightly elevated cholesterol. I was aware of Jonathan’s ladder analogy but this is like finding an extra ladder extension with the overshoot.
It enables super man mode. I still recall in 2003 walking up to a barrier designed to prevent crossing a dual carriage way at that point so requiring 100 m plus walk. I vaulted it with ease while my 5 work colleagues one of whose was a 27 year old triathlete another a ex service PE instructor were astounded.

 

[AliceLily]

There are so many threads I want to read at the moment and I'm not sure where to put this. I have done more reading and scrolling this last week than I usually would on the forum.

The last two days my ME has been warning me to cut back, nausea, beginnings of the vertigo-like symptoms (equilibrium affected). I haven't done any physical exertion that would have brought this on.

I'm going to have to be more aware of how much I am reading and taking breaks at the moment.