Preprint: Dental Care of the Homebound Patient with Myalgic Encephalomyelitis/cfs - Spivack July 2020

Sly Saint

Sly Saint

Senior Member (Voting Rights)
not peer reviewed
Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition affecting millions of adults and children worldwide. Despite the development of multiple criteria sets for defining this disorder, agreement on the core symptoms and other implications of ME/CFS point to the importance of understanding their role in oral health care. Overall, care for the homebound and bedbound population with ME/CFS issues has been under-addressed in the literature to date and there has been little consideration of the oral health needs of this population. Evaluation, diagnosis and treatment of dental concerns may be hindered by many of the diverse symptoms of ME/CFS. The present paper utilizes the International Consensus Criteria (ICC) in discussing treatment considerations for the most severely affected patients with ME/CFS, both in oral evaluation and active care. While no specific dental pathology is linked to ME/CFS, proper care for the patient so affected must take into account the disorder’s symptoms and severity.
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https://www.preprints.org/manuscript/202007.0754/v1

(full free pdf download available at link)
 
MeSci said:
Is this true?

"Patients with ME/CFS are significantly more likely to experience depression and anxiety"
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Nope. I don't think so. It may be that a dentist who doesn't really understand the issues might think they are from when they're seen at the dental practice.
  • Already wiped by the trip to get there
  • Jaw muscles fatigue much mire rapidly than normal
  • May already be struggling from sitting upright in reception
  • Likely to start trembling very soon after receiving a local containing adrenaline
My own dentist knows very little about ME but knows he needs to take it into account. So sometimes I have asked for some extra support at the back of my neck so I can relax some of the muscle. I have also asked him to take his fingers out of my mouth unless they have to be there so I can close my mouth and rest the muscles during treatment.

He knows that within minutes of a local containing adrenaline I will start shaking like a leaf, which causes muscles to fatigue much more rapidly.

He has told me that I am the ideal patient, once I have what I need I am calm & relaxed & I make his job much easier. I think that's because I trust him & I trust him because he listens. It makes it easier for both of us.

Oh yeah, no obvious increased sensitivity to pain. No lowered pain threshold either as far as he's noticed.
 
"Exertional fatigue, cognitive dysfunction (“brain fog”) and memory issues...are commonly noted in ASD." Are they?

"The patient should also be allowed frequent breaks during the appointment as needed." Definitely agree, but there may come a point when continuation is impractical or impossible.

I am opposed to the use of fluoride, as in "consideration should be given towards prescribing a caries-preventive 5000ppm fluoride dentifrice."

I don't agree with "Dental recall examinations should be scheduled on a more frequent basis than for those without ME/CFS, with appointments scheduled every three to four months." unless the patient can definitely tolerate these.

Overall though, a good article.
 
MeSci said:
I am opposed to the use of fluoride, as in "consideration should be given towards prescribing a caries-preventive 5000ppm fluoride dentifrice."
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I use 2800ppm and am planning to switch to 5000ppm once the current tube runs out.

I don't know if it's just me, a subset of ME patients or what but gastric problems mean I need to eat little and often. I eat fruit but as a separate snack and not after a meal. That means my enamel is under more frequent attack than usual.

You do need to be careful with these flouride toothpastes and also flouride mouth washes. You do not want to go swallowing them even in tiny amounts.

You take your choice - if I don't use the prescribed toothpaste I will end up needing more treatment. If I don't use them carefully & properly I'll cause myself further grief.

Following the biannual dental check routine seems to work fine for me, unless i need specific treatment. In my experience, if I have to leave it longer the chances are something will need addressing. For me 3-4 month checks seem excessive.

It's a catch 22 - those who are least likely to be able to brush twice a day & floss are also those who are probably least likely to be able to cope with the additional burden of at least one extra dental check per year. They're probably unable to cope with any.
 
I've been waiting since November 2016 to be put on a waiting list. I could always book an emergency appointment with (A & E?) or maybe private, but at the moment it seems even more fraught than usual due to coronavirus.

I don't have the energy to clean my teeth more than once a day, and don't think I cleaned them at all for several years - had to prioritise other things to allocate my energy to, like keeping a roof over my head!
 
not been able to get to the dentist for the last 3 years since my last crash as far as i know the practice has probably removed me from their patient list. i heard it was possible to get home visits but having a simple check up would then leed to having to attend the practice or dental hospital .
 
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