Pressure Point Threshold and ME/CFS comorbidity as Indicators of Physiotherapy Response in Fibromyalgia. Falaguera-Vera et al. 2020

My bolding

https://www.preprints.org/manuscript/202009.0264/v1

So researchers studying Fibromyalgia 'accidently' find out that physiotherapy doesn't work for people with ME/CFS.
@PhysiosforME

 

Disappointing to see such a poorly organised abstract - I am not tempted to read the paper.
It contains no study design and no data, simply musing conclusions.
I am not a great fan of the peer review system but at leat once upon a time it filtered out stuff as uninformative as this.

 

The term 'preprint' has a longstanding technical meaning - a paper that has passed peer review but is not out yet - i.e. a 'reprint' ahead of time.

It seems to be used here for a manuscript. I don't mind people putting manuscripts on the net, I think it is a good idea. But it means that nobody has at least pointed out that an abstract ought to have some content if people want anyone to read the paper.

 

Yes, you see more and more of this. People who haven't had good training in how to write academic manuscripts. Apart from the last few sentences, this abstract reads like an introduction.

 

it looks like this isn't a paper that has been accpeted to a journal. This preprint site is run by MDPI, who are not well regarded.

 

The idea that the so-called pressure points (it sure would be great to know more about what they actually are, uh?) play a significant role enough in symptoms to impact overall health seems over-simplistic. They're called pressure points I think mainly because they are generally only painful when pressure is applied, otherwise more annoying than anything.

I can't say I have ever heard a fibromyalgia patient naming the pressure point as a particularly important symptom. As in specifically the so-called pressure points, rather than random aches and pain. They are mostly ever mentioned as a diagnostic thing, otherwise they are rather unremarkable in the overall symptom presentation, as in if all other symptoms were eliminated and only pressure points pain remained, I would suggest the patients would largely consider this a complete cure.

Looks more like a solution in search of a problem.

Obviously this would need to be compared with a standard therapeutic massage. Those are pretty good at relieving muscle aches. Who wouldn't like a free massage if they can handle it?

 

A mixed bag, also apart from the uninformative abstract.

The idea behind the study seems reasonable: people with FM and pwME struggle to exercise and suffer from pain. Based on studies on massage therapy in general MT may provide some of the benefits of exercise without actually exercising and also reduce pain. I don't know how good studies into MT are in general but if we assume there is some evidence for those effects it makes sense to test them on FM and ME to see if they can alleviate some symptoms.

They took blood samples throughout so there are some objective measures. Though for some reason they only seem to have done a basic analysis - not finding much - and biobanked the rest for future study (at least I think that's what they're saying).

They describe both positive and negative findings and conclude relatively modestly that MT only has some effect in a subgroup of pwFM who also have especially high pressure pain sensitivity.

They recognise that their small numbers (n=38, half of them with comorbid ME) and lack of a sham treatment control group are significant limitations. Amen to that. But ok, pilot study only.

I don't think the physio was part of the research team as such. It's just that they chose to use a single specially trained physio to provide the MT in the most consistent way possible.

I recognised the name Elisa Oltra, she's had a Ramsay award in the past looking at epigenetics in immune cells. Maybe she's going to have a closer look at the blood samples?

Pity they didn't ask more specifically about PEM (ME was diagnosed by CCC or ICC so those participants must have had PEM). I'm thinking of Moreau's massage arm cuff he uses to induce PEM which would suggest that MT is not a good idea for pwME. In the present study both the FM only and the FM+ME groups report some worsening 24h after their massages but this isn't explored in depth.

 

My thoughts entirely about the abstract - it isn't inspiring me to read it!

 

I found massage helped to relax muscles that I could not use well in the same way it does for cerebral palsy. My neck was very damaged and I had bad headaches from it but after about 6 sessions I had normal use of my neck muscles again with a full range of movement.

It helps some people with ME but not others like so much else.

 

The key with massage for me has always been absolutely positively NO deep-tissue massage. Light massage such as myofascial release has made being mostly bed bound bearable, along with a wool mattress topper and a U-shaped pregnancy pillow.

 

My two-cents from 25 years of living with fibro:

acupuncture made the pain worse, as did massage, even gentle massage. I do self-massage but it's impacting my wrists so:

Capsaicin (hot pepper) cream does help and it has Level 1 evidence for osteo arthritis, too.

A low dose opiod and a low dose of muscle relaxant taken together enable some stretching, gentle stretching which may be helpful

Heat, heat, heat is always helpful, long hot baths especially. Microwave heat sacs, heating pads, too.

*The day of my physical exam by the SSDI (social security disability government agency) for my application for benefits due to a condition unlikely to improve (fibro) well, that day I was in tears due to the realization that yes, I can't work, I won't be able to work most likely and I forgot where the office is even though I know where the office of the exam is.

I had no tender points elicited during the exam. Doc was from India and lovely. He told me about that brit film--about the boy who wanted to become a ballet dancer. He distracted me from my tears. I think I've had only two encounters (concerning fibro) with docs where I was emotionally touched. That's healing and that's pain relief, too. I wish more docs were capable of such moments, more giving.

 

To add. That relief of pain (relief of say 75%) comes from doing all of these as simultaneously as possible:

opioid and muscle relaxant meds & take a hot bath (usually early to mid-afternoon, if the hot water gods are listening)
capsaisin cream to back, neck, shoulders, arms, hand, knees, thighs
and
resting on a heating pad with microwaved heat sac around neck
and watching some diverting series on computer, obtaining a level of relaxation.
At this point a little neck stretching can be done, other areas will respond well, too.

 

Yes, opioids, muscle relaxants, gabanioids, heat, warm-hot baths (but not too hot or OI gets worse and I'll have seizure-like episodes), sometimes ice packs, sometimes stretching are all helpful here too (though capsaicin is very hit or miss). Jury is still out on cannabis. Every time I think I've found a strain that's helpful, it stops being helpful.

What's always been difficult for me to determine is if my pain is ME-related or Fibro-related -- and what Fibromyalgia even is anymore. Which is why questions regarding PEM would have been helpful in this study. That said, there is clearly a post-exertional element to FMS too sooo... It's all such a mess and probably will remain so until we have a way to objectively diagnose what is causing the pain.

 

That's one of the quirks of cannabis, you have to switch strains every few weeks. No idea why but you should be able to go back and forth between a few that work, not necessarily abandon them when they stop working.

 

The fibromyalgia diagnosis has been so diluted over the years that it is almost meaningless. It is often used to mean chronic pain and CFS to mean simple fatigue. (I am not saying anyone here has not got fibro, it exists but it is not diagnosed properly)

There was no association between ME and fibro until CFS was invented and the emphasis was on fatigue. The myalgia part of ME describing agonising muscle pain and the descriptions of patients "hitting the ceiling when they were touched" as it was described to me by the consultant who diagnosed me in 1984 were just ignored.

I have never seen a decent explanation of how they distinguish the awful myalgia of ME from the awful myalgia of fibromyalgia. ME is so misunderstood by doctors, even the ones who are biomedical researchers, that I doubt they have enough knowledge.

Until the diagnostic mess is untangled we are left to find what helps us by ourselves.

 

Merged thread

My bolding

https://www.mdpi.com/1660-4601/17/21/8044

 

From my personal POV, the more active pressure points one has, the more likely any form of manipulation will result in increasing the amount of perceived pain. This includes myofascial release therary, massage and acupuncture.

The onslaught on pain signals when pressure points are highly active bombards the brain. And it can't take anymore signals from tissue manipulation. Heat and drugs only work at this point.

 

I reacted to a couple of pressure points only despite the rheumatologist's best efforts. He kept pressing, obviously putting effort in and asking me did it not hurt. Nope, I could feel pressure but not pain on the majority of the pressure points. Yet pain is a big factor for me.