The very nature of fibromyalgia, like chronic fatigue syndrome (ME/CFS), has left it prone to psychological interpretations. No injury or lesion has ever been found. No accepted blood test points to a biological problem. The disease produces lots of symptoms – a sure sign to some of a psychological problem – and it mainly effects women – who historically have had problems being believed, by the medical profession. Plus, mood disorders such as depression and anxiety appear to be fairly common.
Is fibromyalgia being taken over by a mind/body paradigm (and does anyone care?)
Of course, there are many reasons not to focus on a psychological interpretation of fibromyalgia (FM). Many brain imaging studies have documented central nervous system problems and autonomic nervous system problems are evident. Three drugs have been approved by the FDA to reduce pain. (One drug is an anti-depressant which can relieve pain in FM patients who do not have depression.) Small nerve fiber neuropathy occurs in a significant subset of patients. An immune blood test may have been found. Plus, because the pain-producing centers of the brain that are involved in FM also regulate emotions it stands to reason that people with FM might get emotionally tweaked by the disease.
A large number of mind/body/psychological FM studies have been noticeable for quite some time, but lately their sheer number leapt out at me. That prompted the question of whether a psychological approach to FM has or is in the process of taking over. As a preliminary assessment of that, a short survey, done about a week ago, of the last four months of FM research citations, was done
The Survey
This quick survey covered 46 studies, and it did indeed uncover a bias toward studies using psychological or mind/body approaches to FM. Twenty-two of the 46 citations or almost 50 percent of the studies or clinical trials focused on psychological interpretations of FM or on behavioral approaches to treating it (including exercise).
That trend was especially evident in treatment trials where 60 percent of treatment trials focused on CBT-like programs or exercise.
Behavioral Studies – 10
Ten studies (22%) examined how psychology or behavioral patterns (including exercise) affected FM patients.
They suggested that low levels of self-forgiveness are found in FM, and that more social support improves their mental and physical health. One study reported that “potential” personality disorders (65%) are common. Another found that stress contributes to anxiety, neuroticism and mastery issues and increased pain, fatigue and sleep problems.
Problems with “pain self-efficacy”, on the other hand, are not associated with reduced activity in FM, and higher “self-regulatory fatigue” is not associated with reduced quality of life, and more physical activity and better physical fitness are associated with less pain.
How much effort FM patients applied does affect some cognitive scores but problems with slowed processing speeds and impaired attention prevail, regardless of effort. Fibromyalgia does not stop women from breastfeeding. (Fibromyalgia was tied to mood disorders in the study abstract.) Some women with fibromyalgia don’t walk much.
Treatment Trials
Behavioral approaches to FM dominated the treatment trials over the past four months. Sixty percent (12/20) of the treatment trials used behavioral methods to treat FM, twenty percent involved drugs and other methods, and twenty percent used alternative methods.
Mind/Body – 9
Most of the mind/body type clinical trials produced positive results.
Functional MRI’s indicated that CBT can reduce pain signals in the brain. A very small (n=7) study found that mindful yoga reduced pain sensitization. A new narrative proposing that FM is caused by a “software problem” which is amenable to a 7 week “reprograming intervention” was well accepted by patients. “Active coping” is more effective than “passive” coping.
Mind/body treatment trials were common – and did help.
Learning to live with pain and accept it as a “life condition” is helpful. Reducing catastrophizing with CBT resulted in reduced connections between two parts of the brain involved in producing pain. Mindfulness based stress reduction (MBSR) improved symptoms but had no effect on autonomic nervous system problems. Hypnotic suggestion altered the activity of different brain regions in fibromyalgia patients vs healthy controls.
An NIH funded eight- week study of CBT and neuromuscular exercise program targeting gait, posture and movement dynamics found that the 60% of patients who made it through the course improved their gait and hip strength etc. (No assessments of symptom reductions or activity levels were made).
Exercise – 3
Tai Ji Quan resulted in pretty much across the board symptom improvement. A small Ai Chi trial finds improvements in most symptoms measured. Resistance exercise improves fatigue in FM.
Drugs and others – 4 (20%)
Lyrica did not improve the pain scores in adolescents with fibromyalgia but did improve some secondary measures. Lyrica improved pain scores in FM patients with arthritis. Very little high quality evidence suggested that quetiapine may be useful in the short-term for FM. Electroconvulsive therapy for depression may help.
Alternative and Diet – 4 (20%)
Bright light treatments improved functioning and pain sensitivity. Balneotherapy may be helpful in both the short and long term in FM. Both gluten-free and hypocaloric diets helped with symptoms. Extra-virgin olive oil works better than refined olive in reducing oxidative stress in FM.
Symptoms and Diagnostics – 5
Three symptom/functional clusters can be found. Trigger points in the feet of FM patient contribute to their pain. Fibromyalgia is present and makes things worse in about 20% of people with psoriatric arthritis. Fibromyalgia greatly affects one’s ability to work. Psychogenic seizures are more common in FM than in healthy controls. Axial spondyloarthropathy may be more prevalent in FM than expected.
Pathophysiological Studies – 11
One study may have found a cause of the small nerve fiber neuropathy found in FM, and another documented it in the retina’s of FM patients. Increased activities of two enzymes involved in purine metabolism suggested problems in metabolism may be present (but failed as diagnostic biomarkers).
Four brain imaging studies found a) problems with opioid pathways b) that reduced connectivity between different brain regions is associated with increased pain, and c) that brain blood flows are altered in all phases of the pain response, and d) a possible neurophysiological brain signature.
Vit D levels are low in FM but don’t seem to affect symptoms, nor does neuron-specific enolase (NSE) play a role in FM.
Finally, a most interesting study linked glial cell activity to pain by showing that FM patients with a gene variant that increases activation of the glial cells in the brain tended to be in more pain and have more symptoms overall. Plus, people with both the glial cell and a serotonin transporter gene variant were extremely likely to suffer from more pain.
Conclusion
The answer to the question whether FM has been captured by a mind/body/behavioral paradigm is, thankfully no. Some really interesting biological studies are going on. It’s clear, though, that much more time and money is being spent on behavioral aspects of FM than on trying to understand it biologically.
There’s nothing inherently wrong with a mind/body approach to FM. The central nervous system link between pain and emotions, and the autonomic nervous system studies indicating that an overactive fight/flight response is present in fibromyalgia suggests that these approaches might be helpful.
NIH funding for fibromyalgia has declined 30% recently
Something disturbing is going on, though, when such a high percentage of FM studies are devoted to behavioral studies and clinical trials. If a behavioral approach was curative that would be one thing, but as in chronic fatigue syndrome the effects of these approaches tend to be quite modest. The behavioral approach is not a pathway to a cure for the vast majority of people with FM.
The metabolomics, microbiome, exercise, epigenetic and other findings and several major efforts underway to understand ME/CFS at the molecular level, and the promises of a renewed commitment to ME/CFS research, have produced a spirit of hope in the ME/CFS community. It’s true that ME/CFS has more problems – no FDA approved drugs and fewer doctors – a sense of excitement is present that doesn’t appear to be present in FM.
The two diseases appear to be on different trajectories, and in some ways appear to inhabit different worlds. People with ME/CFS are looking forward to the possibility of a new era of biological breakthroughs. Private ME/CFS research foundations abound. The CDC’s ME/CFS research group is engaged in the largest single study of ME/CFS ever. International conferences occur every year. The Institute of Medicine and Pathways to Prevention reports jump started interest in ME/CFS, and NIH Director Francis Collins publicly pledged to reinvigorate ME/CFS research. The ME Action group has produced two international demonstrations demanding more funding.
Why the much smaller ME/CFS community is so much more active in some ways than the FM community is a puzzle. The Facebook FM community absolutely dwarfs the ME/CFS community, and it’s very active; it’s much more active than the ME/CFS community. Advocacy seems to be almost non-existent, however.
Why? My guess is that some of it comes down to individuals. About twenty years ago, someone or some groups of people, for instance, decided to start the IACFS/ME organization for ME/CFS professionals. The IACFS/ME has made it it’s mission to produce professional international conferences every two years in the U.S. Early in its history, the CFIDS Association of America (now SMCI) chose to make establishing connections at the federal level a priority, and hired a lobbying firm to do that.
That effort paid off when the NIH tried to instill a behavioral approach to ME/CFS around 2000 by front loading an NIH sponsored Conference with behaviorists. The CFIDS Association of America (now The Solve ME/CFS Initiative (SMCI) and others fought off that attempt and it’s never happened again. NIH funding for ME/CFS is almost entirely biological now.
Even if the SMCI wasn’t successful in increasing research funding for many years, it and others were able to uncover the CDC funding scandal, fight off the attempt to contextualize ME/CFS as a psychological disorder, lay the groundwork for the dismissal of Dr. Reeves – the CDC’s ME/CFS chief, stop an attempt to defund CFSAC, produce a special grant review body for ME/CFS and more.
Without CFSAC, for instance the IOM and P2P reports would have never been produced, and we probably wouldn’t be talking about the possibility of a new era of ME/CFS funding. Now that the ME/CFS grant review panel is actually composed of ME/CFS experts, the way is presumably open for multi-million grant awards.
One difference between the two diseases has been the consistent commitment by ME/CFS advocates to remain involved at the federal level.
The answer to the question of why FM is getting such poor funding, and has been receiving some uninspiring research may be because it’s been allowed to. Fibromyalgia is three times as common as ME/CFS yet ME/CFS receives more federal funding. Fibromyalgia funding at the NIH has dropped 30% over the past five years without any outcry, that I can tell.
My guess is that FM patients do appreciate mind/body treatments that help but really want biological answers that will ultimately lead to treatments and cures. Unless someone speaks out about a disease, though, the NIH will go as it does. The NIH’s default regarding diseases like ME/CFS and FM, unfortunately, is to ignore and dismiss them. That’s a message the ME/CFS community has learned through bitter experience.
There are plenty of good reasons why FM should get much better funding than it does. Any disease, of course, that causes the kind of pain and disability found in fibromyalgia should get more than a dollar per patient a year in funding.
FM, after all, has been called the “quintessential pain disorder”. Because the pain in FM is not linked to any specific injury it must be due to a derangement of the pain producing system itself. That makes it a much “cleaner” disease to study than other chronic pain diseases such as arthritis, back pain or cancer pain. The quickest pathway to the source of the chronic pain epidemic could very well run through fibromyalgia.
Plus, study after study has shown that sooner or later a significant proportion of people with painful disorders come down with FM. That means that everywhere chronic pain is, fibromyalgia is, and that the burden it imposes on society is very large indeed.
The fibromyalgia community is already very large. FM prevalence is listed at about 2 ½ times of ME/CFS but the FM community on Facebook is probably ten times larger than that of chronic fatigue syndrome. It is the most common pain condition rheumatologists see. The blockbuster drugs that have been produced for people with FM attest to the need out there, but fibromyalgia remains amongst the most poorly funded diseases of all. That’s just not right.
What can the FM community do to help? I am FM and ME/CFS…
Organization is the key. You have some good FM organizations – helping them to get the word about the declines in funding and the overall lack of funding through blogs and other communications and then following through by contacting federal representatives is one way.
Keep track of NIH funded studies (NIH RePORTER
projectreporter.nih.gov/reporter.cfm) and spending and report on them. Push the NIH to take a more active role. Advocate for NIH funded conferences and reports.
The IOM report made a huge difference for ME/CFS. Getting the NIH to fund an IOM report on FM examining the status of FM research and the holes that need to be filled would be my number one goal. That report would undoubtedly call for significantly more funding.
Putting on conferences where researchers can get together and collaborate is a lot of work but can be very helpful. I wonder if ME/CFS Conferences could be conjoined? Maybe an FM organization could add an FM day to the ME/CFS conferences?
FM is not alone. Every disease similar to FM and ME/CFS including migraine, IBS, interstitial cystitis, TMD is facing the same challenges. These diseases all primarily affect women, cause a lot of pain and fatigue and do not kill…and all are very underfunded.
Private foundations are important to ME/CFS. I don’t know why that hasn’t occurred in FM….(If they are present I don’t know about them.) It’s a mystery to me.
the answer to some of your questions is me/cfs is a horrible multi system disease that is killing people. We have malaise pain but it is insignificant compared to other problems we have. If your A typical like me you have cancers ect. I know you mean well Cort but you seem to be complaining about cfs and comparing funding of fm and comparing to unfair funding for cfs. I suggest you choose another disease to complain about if your going to use example and not cfs. Sorry for my words but I think it was in poor taste to compare using cfs when there sre tons of other disease’s that you may have used for examples and how they managed to get funding, regards, jimmy
I compared FM and ME/CFS because they have similar characteristics, get similar funding, because I am very familiar with ME/CFS and because one appears to be moving forward more quickly.. FM faces the same challenges ME/CFS does and it can overcome them in the same way.
Cort, thank you for this excellent review of recent FM research. I have followed a lot of the links and read the abstracts. This is a milestone moment for me. It is now obvious that I have discovered the narrowly focused self-help regime that works – with the help of information gleaned from your blog over several years.
Many of these FM studies you highlight now, are “finding” improvements to some extent, to some proportion of the study group, from particular approaches to “behavior”. I would hold that many of the study approaches included somewhat of a “chance” that SOME participants would be exercising and remaining active at what happens to be “the right intensity” and “the right pace” FOR THEM. To the extent that this happens by chance or luck, the study appears “successful”. The problem then is, that too much credit is given to other factors that do not actually relate to the improvement.
None of the studies attempt to fine-tune the approach taken with each individual, to try and discover each individual’s “threshold” of intensity for provoking post-exertion malaise, and to instruct the individual in self-pacing and finding the correct level. The first study that actually does this, will be a winner. I will make further comments about some of the studies, separately.
Post exertional malaise is the hallmark of CFS not FM.
Yes, perhaps I should use some other term. But what I am saying is that in FM, the pain, tension and stiffness is definitely worse after exercise that goes over a certain threshold. It is as if FM involves an impaired mechanism for recovery and repair from “over-exertion”. The level above which this occurs can be quite low, depending on “condition”.
“Post-exertion malaise” did sound to me like a good term even if in FM, it is pain, tension and stiffness predominant rather than the fatigue that this term describes in CFS.
From “The al-Ándalus project”: “…physical activity (PA) and physical fitness (PF)…are independently associated with pain, fatigue and the overall impact of fibromyalgia in women. Although PF presented greater associations with symptoms, the results suggest that both being physically active and keep adequate fitness levels might be convenient for fibromyalgia women.”
See what I mean? Buried somewhere in their survey results, and not teased out, is the correlation between “intensity” and “pacing”, and the extent of the benefit.
THIS is very interesting and confirming of my own experience:
“…Overall, unfit patients with low PA showed a worse profile that fit patients with high PA…”
Before I discovered pacing and threshold-targeting, I doggedly remained active and exercising in spite of the pain and the post-exertion malaise. I observed that others with FM who did not do this, but who became exercise-avoiders, ended up with worse pain and dysfunction anyway. It is the story of the “fitness” threshold falling, so that SOME activity will always be sufficient to provoke post-exertion malaise – and this activity will be something less and less. If you don’t go for walks, you will end up unable to go shopping.
The secret to victory, is finding the threshold of intensity of effort above which post-exertion malaise is triggered, and then doing a LOT of exercise BELOW that threshold. Gradually the threshold rises over time, so one becomes capable of DOING more and more without suffering the post-exertion malaise. The process is identical to athletes building aerobic capacity by exercising ONLY aerobically (and avoiding anaerobic) for long periods of time. Only with FM, the intensity is a long way below athletes “aerobic” intensity.
Besides moving one’s threshold up, pain and stiffness is gradually reduced. I believe that exercise is necessary to oxygenate and flush and detox muscle tissues – the underlying problem includes the presence of toxins including the by-products of previous above-threshold exercise.
From the Ehlers, Whipple et al study on “Self Regulatory Fatigue” (SRF) and Fibromyalgia:
“…This is the first study to show higher SRF relating to lower Quality of life (QoL) for patients with FMS. Results suggest that SRF is distinct from anxiety, depression, and fatigue, and predicts QoL above and beyond these traditional factors in the area of chronic multisymptom illnesses such as FMS. SRF may be a “missing link” in understanding the complex nature of chronic multisymptom illnesses…”
This fits with what I am saying. FM sufferers are prone to becoming discouraged because no amount of self-help “works” (unless you accidentally discover your right intensity and pace); then sufferers give up, and spiral downwards in loss of fitness threshold and worsening “post exertion malaise” – caused by the lowness of the threshold rather than by “going too hard”. Most of the dedication to exercise in one’s lifetime with FM would be the same as my case – unwittingly “going too hard” and constantly in a state of post-exertion malaise in spite of having maintained a reasonable level of fitness.
This is absolutely “made to measure” for an eventual debacle in “self-regulatory fatigue”.
I also have both ME or CFS and FM. I was involved with fibro first because that diagnosis and illness hit me first, but I was told there was “nothing they could do” for my fibro, and when your doctors are telling you there’s nothing that usually leads to one of two paths- complacency with what you’ve been told, or desperation to find answers on your own. Not everyone with fibro is disabled, and when I was first hit by it that was true for me, over time it got worse- once I was sick enough that I could not work I suddenly was left with not having to push my way through working and surviving and into being able to be an activist so I can one day hopefully do so again, or at least make it so others won’t be in my position.
Anyway, my doctor lied to me, doctors might be aware fibro exists and willing to diagnose, but I have often found they are not willing to treat it or help you, to them all the studies saying therapy, exercise, and anti-depressants are the answer means that that is all they will tell you- if they tell you anything. Rather then ask about how my pain or limitations were for my illness my rheumatologist prefered to ask how therapy and my anti-depressants were working. I thought once they did work, I would be given different options from that doctor, but no I was even more ignored.
There needs to be more acountability for doctors, and there needs to be patient outreach for education, activism, and support groups.
go shy!!!
From “Cognitive functioning in fibromyalgia: The central role of effort” – Kalfon, Shorer et al:
“…Test of Memory Malingering (TOMM) scores were not associated with pain, fatigue or depression. After controlling for effort, no significant impairment was found in memory scores; however attention and information processing speed scores remained significantly low. Multiple regressions analysis, performed in order to evaluate the contribution of effort, pain, fatigue and depression, found effort to be the only significant variable accounting for variance of cognitive scores on all domains.
CONCLUSION:
The findings confirm impaired attention and processing speed in FM patients, independent of effort level. Nonetheless, the findings point to a general and strong effect of effort on neuropsychological performance in FM patients, especially in the domain of memory, emphasizes the importance of effort testing in this population.”
Is it surprising if people with FM have ended up with problems in “effort” indicated by “memory malingering”? It would be a dead-end to try and help FM as such, by trying to “cure” this “lack of effort” or blame the victims for it. I hope that is not what these study authors were trying to imply. A brain under constant bombardment with pain feedbacks tends to suffer neuropsychological impairment, does it not?
From Tran, Thomas et al study on “integrative training program for adolescents with juvenile fibromyalgia”:
“…patients show altered biomechanics compared to healthy adolescents which may make them more prone to pain/injury during exercise. A new intervention combining well established cognitive behavioral therapy (CBT) techniques with specialized neuromuscular exercise —Fibromyalgia Integrative Training for Teens (FIT Teens) was developed and shown to be promising in improving functioning in adolescents with Juvenile FM. In contrast to traditional exercise programs such as aerobic or resistance training, neuromuscular training is a tailored approach which targets gait, posture, balance and movement mechanics which form the foundation for safe exercise participation with reduced risk for injury or pain (and hence more tolerable by Juvenile FM patients)…”
I suggest that the “neuromuscular training” used in this program happens to have a good overlap with “sufficiently low intensity”, as I am suggesting to be the best approach.
I am nevertheless extremely interested in the “altered biomechanics” observation – I believe that I have suffered from this for much of my adult life. I would like to understand whether this is one condition among several that pre-dispose one to going down with FM, and that one may have had from birth or at least from earlier in life already; or does FM as such result in the “altered biomechanics”? I suggest that FM certainly does “alter” biomechanics, but this may be additional to biomechanical problems that already existed. Cerebral Palsy is basically dysfunction in autonomous muscle control – is it unlikely that some people might have some minor “version” of this affecting some muscles, and not noticed or diagnosed all their life?
P.S. This is in response to Philip Hayward’s comments on altered biomechanics. I have had subtle and not so subtle movement problems as long as I can remember. When I was in grade school, children made fun of me for being a klutz. Friends that spent time with me in college probably noticed that something was wrong. I was nice looking and my mother emphasized that I needed to dress well to overcome the impression I could make of being awkward. With talent, very high academic achievement,and good clothes I managed to have a successful 18 year career. My colleagues did at times notice and comment on my physical problems, but the pain and mobility problems are more severe now than they were tgen.
With fibromyalgia, I feel as if my body is a train wreck. I see an osteopath with expertise in pain management every three weeks. He says I have somatic dysfunction – a physical disorder of unknown cause. He uses very gentle osteopathic manipulation to put my bones back where they belong. I don’t know if the doctor would say that I have altered biomechanics. Based on many years of treating patients with and without soft tissue damage, he is convinced that I have a neurological problem that manifests itself in many ways including impaired movement. Most of the medications I take have an effect on my nervous system. My body falls back into its old habits and I have to be fixed again. Without the spinal manipulation on a regular basis, my pain is greatly magnified. I have had physical therapy but it does not repair me in any significant way. For instance, I can loosen my stiff neck with PT exercises designed to stretch the muscles that support my neck, shoulders and upper back. If I don’t do the exercises, my neck quickly becomes stiff again. I think this kind of response to physical training goes beyond biology and mechanics. I certainly don’t claim to understand what is going on and how all the pieces fit together. Last night, my hands became stiff and frozen for the first time in months, and they are burning. I have no idea why this happens but stretching my hands does not fix the problem.
Really interesting Moira,
Have you heard of Dr. Rowe’s findings of tendon elongation problems in ME/CFS? I wonder how that plays with all this.
There’s also Naviaux’s intriguing idea that in low energy states the body and musculature becomes contracted and tense. Relaxation requires energy…
Hi, Cort,
No, I have not seen Dr. Rowe’s findings of tendon elongation in ME/CFS patients. I have at times extreme muscle and tendon pain. I think this signifies that the barrage of nerve impulses causes the muscles and tendons to form something akin to a knot.
Dr. Younger’s research team interviewed me by phone and their focus seemed to be on fatigue. I did not qualify for the current trials. I have terrible fatigue but I don’t appear to have the cluster of other symptoms common to ME/CFS. I have not personally known anyone with an ME/CFS diagnosis.
It is interesting that relaxation requires energy. Maybe some fibromyalgia patients do have mitochondrial defects that affect energy metabolism.I was low energy even as a teen. I was diagnosed as a young person with ADHD and I had access to mild nervous system stimulants that kept me alert and awake and incidentally reduced my feeling of fatigue
I wish I lived in a big state with low population where medical marijuana is legal. Yes, it is still a Federal offense but at least the state and local police would be tolerant. Marijuana is a great agent for relaxation. I am being serious, not tongue in check. Would a fibromyalgia patient be able to achieve a sufficient state of relaxation to melt fibromyalgia knots? One of my psychiatrists once gave me a prescription for THC, but I did not get it filled. Getting relief from chronic pain would be great. Fibromyalgia apparently a complex puzzle and we are missing some pieces.
This is very sad.
I have found that despite the fact that I have been diagnosed as having ME/CFS only ( by Dr. Bested and Dr Hyde-2 of Canada’s ME/CFS experts) and not Fibromylagia, most medical people and friends think that I have Fibromylagia.
My own GP constantly refers to my “fibromyalgia” despite there being no mention of it in my charts from Dr. Bested and Dr. Hyde. Well meaning friends and strangers also say Fibro after I have told them I have ME/CFS.
Just this week I had dental surgery and after filling in the pre-surgery forms and writing that I have ME/CFS, the dental surgeon came in to talk to me and referred to me having Fibromyalgia!
I’m afraid that if Fibromyalgia is heading back to a psychosomatic model it means that the general public and the medical field will just apply it to ME/CFS, no matter what sort of research is being done presently on ME/CFS. It will take some really big discovery to get this attitude to change.
From Hyland, Hinton et al “Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions”:
“…Research shows that providing patients with alternative narratives can be helpful, but it remains unclear what particular narratives are most acceptable to patients and at the same time provide a rationale for evidence based psychological and exercise interventions. This article described the development of a new narrative… (which) derives from a complexity theory model and provides an alternative to biogenic and psychogenic models… In the final form, the body is presented as ‘a very, very clever computer’ where fibromyalgia is caused by a software rather than a hardware problem. The software problem is caused by the body adapting when people have to ‘keep going’ despite ‘stop signals’, such as pain and fatigue. The narrative provides a rationale for engaging in psychological and exercise interventions as a way of correcting the body’s software…
“…Thematic analysis of written patient feedback collected after each session showed that patients found the model believable and informative, it provided hope and was empowering. Patients also indicated that they had started to implement lifestyle change with perceived benefit. Fibromyalgia patients appear to respond positively to a technology-derived narrative based on the analogy of the body as a computer…”
Again: for some or most patients, the “exercise interventions” happened to be “of the right intensity”. If the “reprogramming” analogy included that the exercise interventions had to be ongoing at that particular level of intensity, then YES – this approach is an accidental winner. I would prefer to give the patients my “narrative” – probably correct – about what is going on in the muscles, than give them a parallel hypothesis about hardware and software. This parallel hypothesis could have been anything: it would “work” if the “exercise interventions” are “of the right intensity”, and it would “work” because of that, not because the patients are now “believing” in something (like a glorified placebo effect).
Thanks for this, Cort. I feel sure that the authors of many of these papers will be the usual suspects or their allies and acolytes–White, Wessely, Chalder, Sharpe. The recent release of the PACE figures was a long time coming, long enough for them to start spreading their tentacles into FM research. Heaven help us…they get everywhere.
My point in today’s comments, and in my own voyage of discovery, is that successful FM management involves scientific, targeted management of PHYSICAL stuff, not “cognitive-behavioral” per se even if there is some overlap between the two.
The danger is that partial success from “cognitive-behavioral” protocols will lead the medical profession down the blind alley of purely “psychological” approaches rather than refocusing research attention where it should be focused, on the muscles and their systems of function, supply, and post-exertion recovery. Boosting someone psychologically, to motivate them do the wrong thing (such as activity of too-high intensity), is worse than useless. If you can explain “the right thing”, patient co-operation is sufficient, and “mind over matter” hectoring is superfluous.
I believe FM patients are eager to try anything in the hope of finding something that works. I do not believe one iota of the suggestion that my attitude or beliefs have been the decider; when first diagnosed with FM and prescribed Amitriptylene, I believed that would do some good. Therefore I should have got better straight away, shouldn’t I? I have had an open-minded belief in other strongly-promoted aids such as Guaifenesin but never got the improvement I have recently. The last failed experiment was with “muscle strengthening” programs, which mainstream medical physiotherapists here seem to have picked as an effective approach for FM. I threw myself into it for months and continued to “believe” even as my functionality deteriorated through increased pain, increased trigger point formation, decreased muscle range of movement, and increased stiffness. It probably took longer for my successful protocol to bring me to my current level because I had to unwind so much of this damage first – I was the worst I had ever been. Yet there is still an influential “study review” being relied on which “finds” that muscle strengthening “can” help FM! Devin Starlanyl says the opposite and I believe she is right.
I agree-well stated!
For ME, just take Viread and raltegravir and get better. Not every day but a few days a week depending on your body ‘s reaction and dr’s advice obviously.
No more need for science or research.
Good luck people.
As with Jimmy’s response, the comparison with ME/CFS struck a negative tone to me as if these two conditions were siblings in a state of destructive rivalry. If we were to view this as a competition, however, in terms of medical acceptance, the development of FDA approved drug treatments and funding received, my definite impression is that FM was ahead for years. Yet most ME/CFS patients have a considerably more life-limiting condition.
When I first developed ME/CFS, the only support group available was one for FM, and since I have overlapping symptoms, I went, only to be gradually pushed to the margins as “not having enough pain”. While I had constant aching, insomnia, considerably worse cognitive and memory problems and 50% less energy than before I got sick, I didn’t complain intensely and at length as was the norm for this group. I did not remotely have the energy to do so nor the belief that loud negative complaining functioned as support. As a result, I did not fit the norm or attain the social currency–and so was considered not to have FM or maybe anything serious at all. The irony that one could be half way down to no life at all and yet be regarded as having nothing serious wrong, even by an FM group with many similar problems, cast a real shadow.
I think we need to try to regard each other and our medical problems with care and respect rather than destructive envy. I have certainly not always met this standard of gracefulness myself.The truth is that both of our conditions still need definitive scientific study and effective treatments. It has been a very long haul for all of us.
Hi Cecelia I’m sorry to hear your not feeling well. Yes for me I’m at about 20 percent capacity at best. I have many secondary issues including 2 cancers so far from this disease that has spread to lymphs. I seem to fit into the new criteria of A typical Me/cfs. My struggle has been a lifetime but got really bad the last 16 years. We seem to be making great strides and I’m working with OMF to try to get this disease more deserved money and attention it deserves. I believe we are finally at a breakthrough. I think we learned just recently is going to take us where we need to be to find medicines that will give us back our lives. In the meantime I will fight for all of us to get NIH funding and celebrity awareness and money. This is a fight we have to fight and win. God Bless all of you who are suffering from these diseases.
yea ray we get it your frustrated and life sucks. Guess what I have been talking about working on cfs not cancer. That said I know more than you what the disease has done. I also know cfs doctors are not sharing information. I know to of the top doctors in cfs world don’t know any more as of 1 month ago as they knew 20 years ago. I get it. That said we all need to push even the best doctors. Hell Peterson wont even call me back after his office said I would die of cancer from this disease without there help. Why? because he is filled up to his 70 percent capacity with medicare patients. I teach top docs about common sense and this disease. So do you want to whine like a brat or man up??? The latest news from Davis , hanson and simmaron is our first huge breakthroughs. Get off you butt and network and fight In 20 years have you reached out to celebrities? have you gone gathered a group and put a gun to someones head in the NIH?? Have you tried to get on major tv show? Have you gotten an audience and reporters together and got on the edge of prominent building and said you were going to jump off if media did not press issue of cfs? Now you can complain as we all have the right to do. On the other hand you can complain and take action. I choose to fight but don’t knock the fighters. All of you think outside of the box fight push think. Also common sense and vision. push the envelope hell what do you have to lose????
Fibromyalgia patients have been largely thrown under the bus. The rheum doctors are now told not to treat fibromyalgia patients. Instead, we are told to get treatment from our family doctors! I tried getting help for fibromyalgia at the University of Alabama Birmingham rheumatology department and was referred to a private clinic of bloodsuckers. While UAB benefits from the reputation of Jared Younger, who is bringing in huge grants to study ME/CFS, the rheumatology clinic refuses to treat fibromyalgia patients. My family doctor will not treat fibromyalgia and I was refused treatment by a local rheum doctor. A kind shrink prescribed naltrexone after I mentioned it and he prescribes gabapentin, and I have gotten some relief but not enough. I have somatic dysfunction as well, which is a shorthand way of saying the my body gets out of whack and my parts have to be put back in place every three or four weeks by an osteopath. However, I am still zapped with exhaustion, on disability and unable to work. Sorry, but I cannot cook or clean for myself or wash my clothes on a regular basis and have been unable to work for a living since a tick bite in 2003 so how am I going to light a fire under NIH? My osteopath says that the most I can expect are a few minutes of joy every now and then.
That’s really rough Myra – I wish you the best!
I know Younger really wants to create a clinic and bring in some good fibro docs. I have heard before of rheumatologists not wanting to treat FM patients – it’s crazy what many people have to put up with just to find good medical care, and, of course, many people can’t. Most doctors get very little pain education in school despite the fact that pain is one of the most common things people see them for.
Good luck with everything.
It is not simply that rheum doctors do not want to treat fibromyalgia patients. The national association for rheumatologists says on their website that rheum docs can diagnose fibromyalgia but that familiar doctors should treat the condition. I told my family doctor that the association of rheum doctors said he should be treating my fibromyalgia. He shrugged his shoulders and said “They can’t make me.”
Just to make sure everyone understands that Dr. Younger is a psychologist and not a medical doctor. He left Stanford University to join UAB and to start the Younger lab. If it weren’t for him, I would know about naltrexone, a drug that is being used off label by some fibromyalgia patients I was stunned by the offhand and quite frankly rude treatment I experienced when I saw a young rheum doctor at UAB, since UAB is a safety net hospital for Alabama. I could not afford to go to an expensive private clinic in Birmingham for fibromyalgia treatment. I think everyone should know that UAB is riding high on Federal research grants secured by Dr. Younger’s team. It is not Jared Younger’s fault that UAB does not treat forfibromyalgia patients. I am glad to know that he is advocating for treatment of fibromyalgia patients. I have to rely on the kindness of local doctors that have a sense of decency.
P.S. A correction: “If it weren’t for him (Dr. Younger), I would not know about naltrexone…”
Thanks for this piece. It is like looking at a comparison between two alternate realities.
I noticed that you used the word inhibit where i think you meant inhabit.
Dear Cort,
The study on Vitamin D does NOT in any way exclude a therapeutic role in this disorder. Indeed, I have been awestruck by its benefits when levels are high and consistent. I now give 25OH Vitamin D injections (600,000 IU in 1ml of oil intramuscularly every 4-6 months). I have repeatedly stated that Vitamin D is a TNF-alpha blocker, as well as influencing over one third of the genome. Type 1 acute phase responses (including elevated serum ferritins are nearly always significantly brought down). The benefits symptomatically may take a short time or some 2 years to be experienced.
It is one of the oldest hormones in biological existence and has been in the biosphere for half a billion years.
To state that there is no intrinsic association between Vitamin D deficiency and FM is naive and extremely unscientific, especially as there are so many non-bone related activities attributable to Vitamin D.
Vitamin D deficiency is only one of many factors (20 pathways identified by Naviaux should make that clear) needing address. It is therefore far too simplistic to exclude Vitamin D on such grounds.
I will need to see what levels were achieved in the reference papers, to see if therapeutic levels were actually achieved in any.
Sincerely
John
Thanks John, I was reporting on the results of that study, not attempting to make a statement about Vit D in general. Thanks for filling in the picture on Vitamin D.
J Food Sci. 2010 Aug 1;75(6):H200-4. doi: 10.1111/j.1750-3841.2010.01704.x.
Effects of vitamin D3 on expression of tumor necrosis factor-alpha and chemokines by monocytes.
Kuo YT1, Kuo CH, Lam KP, Chu YT, Wang WL, Huang CH, Hung CH.
Author information
Abstract
The association between vitamin D deficiency and asthma epidemic has been recognized. Tumor necrosis factor (TNF)-alpha and chemokines play important roles in pathogenesis of asthma. However, whether vitamin D has immunoregulatory function on TNF-alpha and chemokines expression in human monocytes is still unknown. The human monocytic cell line, THP-1 cells and human primary monocytes were pretreated with various concentration of 1alpha,25-(OH)(2)D(3) for 2 h before stimulation with lipopolysaccharide (LPS). Supernatants were collected 24 or 48 h after LPS stimulation. The levels of TNF-alpha, interferon-inducible protein 10 (IP-10)/CXCL10 (the Th1-related chemokine), macrophage-derived chemokine (MDC)/ CCL22 (the Th2-related chemokine), and interleukin 8 (IL-8)/CXCL8 (the neutrophil chemoattractant) were measured by ELISA. 1alpha,25-(OH)(2)D(3) could significantly suppress TNF-alpha and IP-10 expression in LPS-stimulated THP-1 and human primary monocytes. However, 1alpha,25-(OH)(2)D(3), especially in higher concentration, could significantly enhance MDC expression. 1alpha,25-(OH)(2)D(3) had no significant effects on IL-8 expression. We found 1alpha,25-(OH)(2)D(3) could significantly suppress TNF-alpha and Th1-related chemokine IP-10, which both play important roles in pathogenesis of severe refractory asthma and autoimmune diseases. However, 1alpha,25-(OH)(2)D(3) enhanced Th2-related chemokine MDC, which may result in Th2 inflammatory cell recruitment and thus adversely affect asthmatic patients. Although vitamin D has potential utility in the treatment of asthma and autoimmune diseases, excessive use of vitamin D may not be suitable in patients with Th2 allergic diseases
John,
The vitamin D data is interesting. However, it is unclear to me if the science is strong enough to support giving mega doses of vitamin D to fibromyalgia patients. Yes, I have low blood levels of vitamin D and my doctors often prescribe it to bring up my levels. I also am a breast cancer survivor, and my surgeon said she hoped that I would not take a bunch of dietary supplements. Nobody forgets the beta carotene fiasco. The caveat here is that vitamin D is a hormone with potentially unknown effects on on the human body at mega doses. It concerns me that someone might read the information presented here on vitamin D and decide to take high levels without expert oversight.
No criticism intended here. I know that I feel better when I take vitamin D as prescribed by my physician. In fact, your post reminds me that I need to have my vitamin D levels tested soon.
I am homebound most of the time and often down on the couch with fibromyalgia and arthritis pain. However, my fingers still work. I was a health writer in my previous life, and I worked on Federal government contracts for NCI and other groups. It did occur to me that while I cannot be an activist, I can write a letter here and there. If anybody here starts to agitate the Feds about the lack of treatment for fibromyalgia patients along with the paucity of research grants, please let me know. I can fully document my problems with getting care for crippling fibromyalgia.
P.S. it would behoove the fibromyalgia community to apply for a grant to study the financial impact of fibromyalgia on the Nation’s economy. When people see numbers attached to a disease or disorder, it often shocks decision makers into action. I am on full disability – and my case is considered severe and permanent – at considerable expense to the Federal government. I wish it were otherwise but I cannot work.
Thanks Myra,
I can see how you might think that my usage of slow release Vitamin D might seem like mega doses, but the levels achieved in blood are in the normal range in nearly all patients. The way to avoid potentially harmful effects is to monitor levels of Vitamin D so that they stay within the therapeutic range. Blind treatment would be totally irresponsible and potentially dangerous.
I still maintain Vitamin D is important in the context of ME/CFS.
Let me also say this:
“Vitamin D is much safer than big Pharma TNF-alpha blockers”.
As I see it, we may find that we are moving back from population based treatment approaches to personalised treatments. We have to do so, as complexity (the “20 pathways or more problem”) mandates this. The statin fiasco about what levels of cholesterol are safe is a good case in point.
When we reduce medicine to algorithms that monkeys are inforced to follow on the basis that this is what we know as good evidence based medicine by those who don’t know or can’t see a bigger picture, we will then be in a sorry state.
I cannot see the treatment of CFS/ME as ever being reduced to algorithm based management. The PACE trial attempted to do this, as one of its primary motives.
Why intramuscular Vitamin D? You said yourself that you forgot about how low your Vitamin D levels are. An injection of Vitamin D avoids such mistakes. Oral Vitamin D is not always effective, as there are common problems with malabsorption of fat soluble vitamins in general, that I regularly encounter.
The goals are to reduce inflammation of the type we see in ME/CFS, reduce bone loss that leads to destructive bone loss with increased morbidity and mortality in my patient population, and to improve wellbeing (and there may be other benefits we have yet to see, especially given its biosphere dominance for 500 million years or more).
Yes, it would be great to have this as scientifically proven, just like every other treatment that has ever been tested in this setting. After nearly 30 years of clinical care of patients with ME/CFS, I have run quite a few agents through the mill that just don’t work as claimed. My approach to patient care is not blanket medicine. I am fully cognisant of my role to NOT use medications that fail to meet any standards of benefit and which I have no evidence of efficacy, other than the patient’s say so. Objectively monitoring the consequences of a given intervention is the scientific approach. Only by seeing the same outcomes in multiple instances can I exclude a spurious observation.
In the case of Vitamin D, I did not want the scientific community to feel that the story of Vitamin D has been finalised in this setting. That is why I voiced my understandings about it here.
I do not have any protocol for patient management. Every case is treated differently, based on the results of many blood, urine and other tests. No two patients are the same. So, a protocol approach is ridiculous.
You would think that the Queensland sun would solve the Vitamin D problem. Unfortunately, that is not the case. I have witnessed patients with Vitamin D DEFICIENCY who work without sun protection all day long, with bare well sun tanned backs to boot. One must remember that the skin is an organ as well, and it too is not immune to the disease we call ME/CFS.
In my view, skin is affected too in this disease.
So, just to reiterate, Vitamin D in slow release oil, in the doses I indicated, are NOT, in general, mega doses. I also want to emphasise that this is not Vitamin D supplementation, but Vitamin D therapy. It must be monitored with blood levels just like any other therapy. In an iron replete patient, do ferritin levels fall after therapeutic levels are achieved? Do urinary markers of bone loss resolve with the doses of Vitamin D employed. Does bone density improve?
PS DHEA is also a TNF-alpha blocker, as well as an agent that maintains bone density independent of testosterone levels. The combination of DHEA and Vitamin D are prednisone sparing and can be used to manage rheumatological conditions as well.
Finally, I have had no breast cancer deaths whilst on these agents, nor any heart disease deaths. Suicide is the number 1 killer in my patient population, followed by lymphomas.
So, I’m just saying “DON’T FORGET VITAMIN D”
Thanks Myra for your reply. Regards JLW.
I appreciate the clarification. I thought this discussion was about fibromyalgia patients. In my case, I have perfect bone density despite being mostly housebound since 2003. Oral vitamin D as prescribed by my physician works very well after six weeks of high doses in restoring muscle function and improving my mood. I am tested for vitamin D levels on a regular basis. My doctors will never prescribe DHEA or TNF drugs due to my breast cancer diagnosis. I do not take prednisone due to possible exposure to Lyme disease along with no evidence of joint inflammation. The prevailing belief is that fibromyalgia is a neurological disorder not a rheumatological one.
I appreciate your comments in the need to tailor treatments based on the needs of specific patients. It is not happening where I live for those with fibromyalgia. I am in essence my own physician. I keep up with the research literature and make treatment suggestions, but ultimately I have to rely on several kind doctors to consider my my ideas and to prescribe medications that might help.
My 8 breast cancer patients all took DHEA. They ALL survived. One had metastatic breast cancer in lungs. The lungs were full of cancer. Were it not for DHEA, which halted progression, as no chemotherapy could be offered due widespread chronic post-op infection that took 2 years to control by me, she would have died within 3 months, had it not been for the DHEA. When chemo was finally given at this 2 year mark, she had the most profound positive response of all 12 initial candidates receiving this new agent. All lung metastases disappeared completely as measure by MRI of her chest.
What I said was that my doctors would not prescribe DHEA for me. Each person has a unique health profile, and thus, I think it is a good idea for anyone, but especially patients with chronic disorders, to collaborate on decision making with a team of physicians.
I experienced significant relief from fibromyalgia pain and stiffness while on hormone replacement therapy (HRT). I took a risk that I might end up with breast cancer after HRT therapy and, indeed, I did. Did the HRT cause breast cancer? Probably not. However, my surgical oncologist and radiation oncologist strongly feel that HRT fed the tumor that grew quickly in a six month period on 2015 after my annual mammogram. Would I risk hormone therapy with DHEA that would probably help me feel better in the short run when the pathology reports from my breast cancer biopsy showed that I am ER/PR+ proving that my breast cancer was hormone mediated? No, one mastectomy is enough payback for the two wonderful years I spent on HRT.
Many factors play into the use of hormones such as DHEA. You made decisions in tandem with your patients based on comprehensive knowledge of their health status.
As with ME/CFS, are there multiple case definitions of FM? Are the multitude of psychological studies rooted in a vague case definition? With CFS, there are functional case definitions (like Oxford, in which the vague symptom of fatigue is “unexplained”–and depends on maintaining that ambiguity) and bio-organic. Functional studies will only yield functional results.
The American College of Rheumatology has established provisional criteria for diagnosing fibromyalgia cases that can be found in a simple Internet (Google) search. These criteria go beyond the previous diagnostic criteria that identified fibromyalgia cases based on specific tender point discovered in a clinical exam. Depression must be ruled out as the primary reason for the patient’s perception of severe pain and other symptoms. When I went through the disability process, I was evaluated by a clinical psychologist chosen by the Federal government the purpose of eliminating depression as a causal factor. Not everyone with fibromyalgia is depressed. Similarly, not all fibromyalgia patients have experienced trauma, although some have. To my knowledge, nobody has proven that fibromyalgia has its roots in psychosocial disorders.
Thanks, Myra.