Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

[Jesse]

Interesting discussion.

While I have permanently worsened from (1) pushing too hard I have also worsened for what seems like (2) no reason at all, and also from a (3) TDAP vaccine. I also have (4) seasonal variation. Because (1) is discussed a lot it seems like the other reasons are not talked about as often.

I wish we knew more about other diseases like MS that have variation, but also a progressive subgroup. Why are some progressive and others not.

The possibilities definitely seem endless. I mentioned in another thread that even doing too little seems to make me worse..

 

[wigglethemouse]

What can we do to get deterioraters such as myself a suitable diagnosis that fully reflects their symptoms? It's become clear to me that there's no room for permanent damage being believed under an ME diagnosis, not even our own fact sheet says this exists. It all makes me feel very invalidated.

I often wonder this too. The issue is that there is no medical specialty for ME/CFS, so no biomedical clinics, no tracking of deterioration, no statistic on damage arising to organs, bones, and tissues. No solving of individual cases that can hint at pathways involved in others.

The biggest permanent damage that could easily be tracked is loss of bone density. An Australian doctor John Whiting used to send ALL his ME/CFS patients for a bone density scan and a large percentage had osteoporosis and ostetopenia, even at young ages. Yet no one else has done this. There is no clinic that could notice a trend for lower bone density and investigate. When it is brought up our concerns are dismissed as "it's just that you are not active" or other reasons. But in my mind there must be a reason. Bone density loss is permanent damage!

For those of us that have small fiber neuropathy there is no treatment because the only treatment is to address the root cause such as diabetes or sjogrens. The small fiber neuropathy gets worse, pain increases and spreads, blood flow deteriorates, and damage starts to occur, dysautonomia gets worse, neurological symptoms progress........ Nerves can repair, but only if you treat the root cause! Without that it is permanant damage.

 

[wingate]

And many patients are being taught by other patients that doing too much can make you worse. So it’s natural that they attribute their worsening to doing too much.

This is the same issue as with any mind-body intervention where you’re being taught what is going to happen so you attribute what happened to what you did at the time.

I'm having trouble being convinced by this argument. What about the patients who notice a pattern of worsening after doing too much before they know they have ME and have a chance to be taught anything by other patients? Or those who did GET and were taught by other 'professionals' that it would help them?

I agree that correlation does not equal causation here, but as a patient trying to do everything not to get any worse, I think I'd rather be wrong about the causal pathway and be very cautious about overdoing it than push it and maybe end up getting worse on the basis that we don't know for certain what the causal pathway is. For me, it's kind of like, how many times do I want to eat a mystery berry in the forest and get a stomachache afterward before I decide to avoid that berry.

 

[Peter T]

Even if we are dealing with correlation rather than causation I would still advise against over exertion if it can be avoided, just as I would advise against playing on the railway line.

 

[Jonathan Edwards]

I agree that correlation does not equal causation here, but as a patient trying to do everything not to get any worse, I think I'd rather be wrong about the causal pathway and be very cautious about overdoing it than push it and maybe end up getting worse on the basis that we don't know for certain what the causal pathway is.

I don't think anyone here would argue against that. (Except maybe the odd mind/body visitor.)

The point from my perspective is that it that we should not assume we understand the causal links involved and so should not try to classify people according to such supposed causal links. The 'diagnostic void' is a legitimate reflection of our ignorance.

There is also no doubt that certain physicians have been advising not just being careful but complete rest flat in bed and patients have come to believe the need for that. Paul Garner claimed that he had been convinced of the need for rest by other patients. People are very suggestible. There are good reasons to be uncertain about the causal interpretation even if it is sensible to assume it holds in the short term at least when managing activity.

 

[Trish]

There is also no doubt that certain physicians have been advising not just being careful but complete rest flat in bed and patients have come to believe the need for that. Paul Garner claimed that he had been convinced of the need for rest by other patients.

I haven't come across any information about any physician or patient group advising complete bed rest long term. Nor do I believe PG was advised to do so. I'm sure his articles talked about pacing and building into it some rests each day, not staying in bed all day unless crashed and unable to get up.

Some experiment with 'aggressive rest therapy' but I understand that to be for days or up to a few weeks, not long term, unless of course the illness is so severe getting out of bed is not an option.

 

[Utsikt]

Aggressive rest is still making its rounds in some ME/CFS circles in Norway.

@wingate my point is essentially just a reiteration of what Jonathan is saying.

I have no reason to doubt anyone’s timelines. But we also have no reason to talk about causation.

 

[Jonathan Edwards]

I haven't come across any information about any physician or patient group advising complete bed rest long term.

I have. I will not be more specific but I am not talking about someone nobody has heard of.

 

[DigitalDrifter]

While I have permanently worsened from (1) pushing too hard I have also worsened for what seems like (2) no reason at all,

Worsening from pushing through beyond PEM and over your Deterioration Threshold is called a consequential progression whereas getting worse for no reason at all is called a natural progression. It's possible to experience both.

Somebody needs to add these terms to MEpedia.

 

[DigitalDrifter]

The 'diagnostic void' is a legitimate reflection of our ignorance.

I think the medical profession has had enough time now to have collectively written to the World Health Organisation to give deterioraters a legitimate and accurate diagnostic label. They must have known about us for at least 70 years. The truth is that they simply don't believe us and would rather have society treat us as mentally ill than offer us a physical diagnosis.

 

[Jonathan Edwards]

I think the medical profession has had enough time now to have collectively written to the World Health Organisation to give deterioraters a legitimate and accurate diagnostic label. They must have known about us for at least 70 years.

I don't follow the logic. We have known progressive and about remitting forms of rheumatoid disease for longer and there is no 'deteriorating RA' diagnosis. Diagnostic groupings are based on features of disease that are useful in prediction of future outcomes and responses to treatment. Even for diseases where we have progression subgroups like multiple sclerosis (relapsing-remitting vs progressive) the diagnosis is based not on how much progression there has been but on features that are likely to predict progression. I don't think we have good evidence for clear subgroup patterns for ME/CFS that serve that function. Some people get very bad early on and improve. Others deteriorate later.

 

[DigitalDrifter]

We have known progressive and about remitting forms of rheumatoid disease for longer and there is no 'deteriorating RA' diagnosis.

People with RA don't cause permanent damage to themselves by walking to the bathroom. RA patients are not known to medical professionals as whiney somatizers with s*** life syndrome. As far as I know they are not locked up in mental hospitals due to the belief that RA can't be deteriorative.

As for evidence there's plenty of patient testimony, enough to warrant sub grouping patients who have permanently deteriorated so that they can be treated with consideration to prevent further deterioration.

 

[Jonathan Edwards]

People with RA don't cause permanent damage to themselves by walking to the bathroom.

I am afraid they do. Tendon ruptures, fractures, spinal cord damage from falls...

 

[Utsikt]

As for evidence there's plenty of patient testimony, enough to warrant sub grouping patients who have permanently deteriorated so that they can be treated with consideration to prevent further deterioration.

Would you treat the non-deterioraters any differently? It’s unethical to force anyone to endure the suffering associated with substantial increase in their symptoms for prolonged periods of time.

And because we have no way of knowing if you could move from non-deterioratiom to deterioration, so why take the risk for anyone?

There is no reason to differentiate because adequate care would be the same for everyone.