ME/CFS Professional Psychiatrist & Clinical Advocates - Perpetuating Inability to Pace Myth?

[AquaFit]

In reply to Mary Dimmock's comment found here: http://www.healthrising.org/blog/20...tigue-fibromyalgia/?replytocom=740267#respond

I'm more concerned about the overall pattern of prominent CFS/ME doctors promoting or accepting the idea that our crashes are due to some "childhood stressor" which makes us psychologically incapable of pacing ourselves. Even in the case of multiple chemical sensitivities.

You may have already read my comment on healthrising but in case you haven't: At the IACFSME conference in October, I attended the Professional talks rather than the patient talks. I heard Dr. Jason inform clinicians and researchers that "by far" (sweeping hand gesture) the majority of funding is allocated to the psychiatric field for a reason. He said that the greatest benefit of the biological research is to help patients "understand" how to pace. He gave the example of wearable heart gadgets. After his talk, a clinician, quite anxious, asked, "How can we help our patients understand what we're telling them?" Dr. Jason's reply was vague and to me gave the impression that it is very difficult, and the clinicians should leave that to the psychiatric field to figure out.



Mary, here in Canada I cannot leverage even family connections with hospital board members (some of whom are doctors), fundraisers, and former politicians to raise support for ME/CFS. All the biological research of late makes no difference. Doctors in our social and family circle gently tell me that CFS is psychological and my chemical sensitivities are most likely the effects of being exposed to organophosphates on the farm as a fetus. And even this acknowledgement of suffering is after I've insisted I must have ME/CFS. In their eyes, they're doing me a huge favour by not accepting I have CFS.

You'll likely say that there must be some psychiatric advocacy/research for ME/CFS as the brain is involved in the illness. I would reply that may be true, as in Alzheimers. But Alzheimers research has concluded that anti-cholinergics are contraindicated as these drugs, which span pain meds to antihistamines to antivirals and more, lower baseline acetylcholine and further the progression of the disease because the geriatric blood brain barrier is more permeable. Or may have even caused Alzheimers due to cumulative use.

After all the funding of the psychiatric field for ME/CFS, I ask, where is the scrutiny of harms of medications to us? Is our blood brain barrier also not more permeable? Shouldn't opthamologists be informed that organophosphate eye drops may cause us to feel bad? Shouldn't our General Practitioners be warning us not to use chemicals like Pinesol or bug spray or lice removal instead of sending us to psychiatrists? Shouldn't anesthesiologists be informed that some anesthesia may be harmful to us? Antihistamines, antivirals, antidepressants, etc. etc. If there is not enough research to know if anti-cholinergics including organophosphates are harmful to us, then I ask, with all the funding to the psychiatric profession for ME/CFS, why not? If ME/CFS is unlike Myasenthia Gravis and MS regarding acetylcholine, why is Rituxamab, which targets muscarinic acetycholine receptors, being tried on ME/CFS patients? If the psychiatric profession chooses to use their funding to mostly look for a psychopharmacological cure for CFS, then perhaps it is time to insist their funding be giving to researcher/clinicians like Dr. Navauix, who advocates for the 28th amendment in recognition of the harms that poisons in food, water, air and medicines can cause us. It's time to stop the politically convenient myth that we're in bed sick because we have an inability to pace.

http://naviauxlab.ucsd.edu/the-28th-amendment-project/

Thanks for listening, Mary.

 

[Cort]

Boy I hope he didn't say this

Dr. Jason inform clinicians and researchers that "by far" (sweeping hand gesture) the majority of funding is allocated to the psychiatric field for a reason.

Most funding is not devoted to psychiatry. A lot of funding has been devoted to CBT but that is not psychiatry. By psychiatry I mean studies on psychological aberrations, neuroses and things like that. Some funding is certainly not most of it.

We should note that the effects of mood disorders on study results are regularly tracked . A hundred studies have probably assessed whether mood disorders affect immune, autonomic nervous system, etc findings in ME/CFS and not a single one that I can think found that they made any difference at all.

Doctors in our social and family circle gently tell me that CFS is psychological and my chemical sensitivities are most likely the effects of being exposed to organophosphates on the farm as a fetus.

Doctors are so darn frustrating. Why does it take them so long to catch up? Why are they so consistently behind the research?

I know Lenny promotes pacing as he should but I can't believe that thinks that improper pacing is keeping us from being well. I think he did one study which found that a subset of patients have ME/CFS.

Lenny, by the way, has ME/CFS and is intolerant of some chemicals...

 

[Cort]

This is not to say that pacing is easy and the agitation caused by sympathetic nervous system activation could make it more difficult to pace...

 

[AquaFit]

I was shocked too. I don't remember the exact words, but that's the gist of what I heard. I didn't say anything, as I wasn't sure if I should be there in the first place (I didn't know it's a patient driven conference at the time) and I thought maybe there's a communication difficulty between medically trained and laypeople. So I went home and decided that if I listened and read studies, etc. I could create some communication materials. (I was a life coach/communications coach for a short while in my single days.)

The more I read and listened, and related to doctors in the family, the more I realized and was helped to realize that the psychiatric protocol, at least in Canada, is doctor driven, not government driven. The government may prefer the psychiatric designation, but doctors are not hindered by government in Canada to the point that a grave injustice like this could be imposed. My husband's cousin is a nuclear radiologist and he's extremely gifted and keeps up with the cutting edge of research. He told me he has colleagues who research controversial medical issues, and they're quite altruistic. He didn't believe that if there's researchers out there finding important biological information that it could be kept out of the Canadian protocol. Another doctor in the family is quite prominent and taught at a university in Toronto and has six offices, etc. So I'm not just speaking to run of the mill doctors. My husband's family's participated in helping to fund a university library here in Toronto, a palliative care floor at a cancer hospital, a reading room for nurses at a hospital; when my mother in law died they set up a small strabismus research fund with donations, etc. It's this pushback from them that's made me realize that Dr. Jason's comments (and I'm sure he'll come on and clarify them somehow) to his colleagues carry great weight. Somehow, the "childhood stressors" are considered a very important factor in our illness. Maybe Dr. Jason feels he shows how to conquer ME/MCS because he's not bedridden? I don't know. But I am firmly convinced that what is attributed to a psychological stressor was first found to be a toxic event (whether chemical or viral or bacterial) which creates a lower threshold of sensitivity for us. Not so much a disease as a fragile homeostasis.

BTW, I saw a psychiatrist here in Toronto after meeting him at a lecture at a fundraiser. He was the only doctor doing brain SPECT scans and I wanted to see if I had ADD. After I got my SPECT scan results, he wanted help expanding his influence with his colleagues as they'd been stingy in allowing him access to the SPECT scanner. And I wanted to figure out my bad memory. So I saw him for appointments a handful of times. I spoke to his colleagues and found out why he's been blocked from furthering his work, and my appointments with him were frustrating as he was convinced my SPECT scan showed ADD and he wouldn't listen to the ME/CFS SPECT scan research I tried to tell him about. So when I told him I could no longer spend time seeing him, he told me I owed him $540 for not giving 48hours notice for 3 missed appointments. One was definitely my fault, I forgot and didn't call, but another was the day my grandmother died and I'm her executor, and the other was for a migraine which made me bedridden from a perfume I inhaled in public. For both appts I gave notice but not 48 hours. The doctor told me that if I had paced I wouldn't have missed the appointments. That's how pervasive this attitude is in medical circles. We can bring all the biological information we want. We are not heard. Only someone like Dr. Jason who's on committee and organization boards will be heard. And we don't know what they're saying when we're not there.

I wore a professional tag to the conference. It was interesting. I also listened to instructions for clinicians on how they should conduct cardiopulmonary exercise testing. There was a heated discussion about whether it's worth the risk to some patients for a diagnosis. A defibrillator and MD should always be in the room during the test, if I heard right. These are the conversations I want to hear. What's really being said when we're not thought to be in the room. (I think the cardiopulmonary exercise testing is great, by the way, but for a different purpose for me than diagnosis. I want to book a session to design an exercise routine that's right for me.)

 

[Ladyliegh]

I may not have the correct terminology, so please be patient with me...
The concept of pacing is a complicated one. In the initial severe illness or subsequent relapses, there isn't much to pace, it is about surviving. Obviously not an option to push yourself when you are extremely sick. I think that pacing has it's place later, when there is an indication, however slight, that minor improvements are taking place. That is the time to gently start pacing, it is very tricky not to overdo. At least that has been my experience. In the early years, so little info was available, I like others pushed myself, mostly to catch up on all the neglected stuff from when I had been so sick..only to make things worse & myself sicker.
Pacing myself in the beginning wasn't an option, it only later became possible as very slight improvements started happening..
But I guess it doesn't matter since it was all in my head

 

[AquaFit]

I may not have the correct terminology, so please be patient with me...
The concept of pacing is a complicated one. In the initial severe illness or subsequent relapses, there isn't much to pace, it is about surviving. Obviously not an option to push yourself when you are extremely sick. I think that pacing has it's place later, when there is an indication, however slight, that minor improvements are taking place. That is the time to gently start pacing, it is very tricky not to overdo. At least that has been my experience. In the early years, so little info was available, I like others pushed myself, mostly to catch up on all the neglected stuff from when I had been so sick..only to make things worse & myself sicker.
Pacing myself in the beginning wasn't an option, it only later became possible as very slight improvements started happening..
But I guess it doesn't matter since it was all in my head

Brace yourself...The word pacing as used by doctors is a treatment plan for "somatic symptom disorder" which CFS falls under, as far as the medical establishment is concerned. http://www.mayoclinic.org/diseases-...mptom-disorder/basics/prevention/con-20124065

and...http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/treatment/con-20022009

Whenever someone says "CFS is not ME" they're not reflecting the official medical establishments point of view. In medical annals, ME has been replaced by CFS. Any literature produced with the term ME is to keep patients happy.

The medical field considers CFS a medically unexplained illness. Yes, now researchers are finding real biological symptoms, but researchers at the recent IACFSME conference were clear: they know what is happening in the body, but they don't know why. So, a medically unexplained illness still. It is not psychogenesis, but it is somatic. http://patient.info/doctor/medically-unexplained-symptoms-assessment-and-management
"The term [medically unexplained symptoms] 'MUS' comprises a wide spectrum of complaints ranging from mild transitory illness to chronic disorders with severe disability...Other names such as somatisation and somatoform disorder have been replaced by somatic symptom disorder (SSD). Although the two concepts overlap, they are not synonymous: In fact, DSM-5 has removed the requirement for symptoms to be medically unexplained before the diagnosis of SSD can be made..."
Here's the version for patients: http://patient.info/health/somatisationsomatoform-disorders

Here's a study which "finds" that "functional somatic syndromes" including chronic fatigue are a result of childhood psychological trauma: https://www.ncbi.nlm.nih.gov/pubmed/24336429

I had thought that multiple chemical sensitivities were considered purely physical. Turns out the official medical stance is that it's also a somatic disorder. Since government approved chemicals have been tested and are proven non-toxic to the majority if people, we're deemed to be overreacting to them physically for somatic reasons. So, the treatment for MCS is avoidance of the chemicals. Here's a study by Dr. Jason and others, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1890280/ and they refer to multiple chemical sensitivity studies which attribute MCS to psychosomatic disorder. For example, this study: https://www.ncbi.nlm.nih.gov/pubmed/10849458 Part of the conclusion of that study says, "The authors conclude that the subjects remain strongly committed to the diagnosis of MCS, and although improved since their original interview, many remain symptomatic and continue to report ongoing lifestyle changes." Not still sensitive to chemicals. "strongly committed" to being sensitive to chemicals. Here's another psychosomatic study the Jason et al study refers to: https://www.ncbi.nlm.nih.gov/pubmed/10489969 "We review the concept and importance of functional somatic symptoms and syndromes such as irritable bowel syndrome and chronic fatigue syndrome."

Dr. Natelson uses the word functional somatic syndrome, but he puts the term in quotation marks: http://jamanetwork.com/journals/jama/article-abstract/193852

Dr. Broderick states on his website he is searching for "well chosen and well timed pharmaco-behavioural interventions" for CFS. http://psychology.nova.edu/faculty/profile/broderick.html

Dr. Byron Hyde rails against somatic definitions applied to ME/CFS. Dr. Alison Bested teaches medical students to use the word ME. Dr. Navaiux has a plan and lobbies for the measurements of health effects of human made chemicals and their effects on our bodies. Open Medicine Foundation results should be a tool we can use to take to Colleges of Physicians and surgeons to finally get them to think outside of the somatic box. It will still be an uphill battle though. For the ruling medical establishment to accept that we truly are having non-somatic reactions to natural toxins and chemicals including medicines would mean accepting that a number of us have suffered iatrogenic setbacks.

 

[Ladyliegh]

Lol, Then I bless them with personal & upclose experiences so they too can have the joy of CFS in their lives... May they publicly look like the horses asses they are.
Before I was ill with CFS, I was diagnosed with endometriosis. Upon seeing a specialist he told me that all my symptoms were in my head & sent me to a shrink. The following month the term PMS was coined in newspapers & magazines across the country, with a list of my symptoms. I took a magazine to his office & told them to give it to him, since he was clearly uneducated & unqualified to be a specialist of a woman's disease. (Maybe this would help)
Btw, after 1 visit to the shrink, he said I was clearly in pain & to get another Dr.
Honestly, how much longer before CFS crosses over to a legitimate disease in the minds of psychiatrists? & physicians?

 

[AquaFit]

As Joe Cochran sings, we need to "kick at the darkness until it bleeds light".

If little tiny microbes can take over a whole body because of sheer number, our voices and efforts individually combine to make a whole that's more than any one individual. Helpful (and many are also fellow patient or caregiver) researchers, clinicians, activists, filmakers, shi# disturbers (civil disobedience), filmakers, journalists, writers, actors, activists, etc. etc. are making a difference every day and progressively something will tip the balance to sanity. (Have to acknowledge Cort's extraordinary efforts which make communicating here with quality people and reading quality information possible).

Personally I don't use the word pacing as now I know it's a dog whistle to the medical world. I refer to gaining biological knowledge then applying it to myself as disease rehabilitation which should be in the purview of medical doctors. There's enough research around (and we see it here all the time in our tips to one another) to distribute information to medical doctors and I'm trying to do my part here in Canada to advocate for that.

We do have gynecological problems that don't fit the mainstream mold as far as detection and treatment. I'm discovering that myself and a number of other women will have problems with very heavy periods - it seems to be a hormone balancing problem of our bodies. When we (not sure if you're including in the "we") take synthetic medication which our bodies can't process we get sicker and then doctors throw up their hands and say somatic. I found a naturopath to make a tincture for me that stops the bleeding and she put me on MediHerb's Chastree which should balance out my hormones in 3 months or so. But yeah, my getting sicker from medical treatment (iatrogenisis) of period problems and then seeking out other doctors that could help me is officially considered somatic behaviour. And you're right, the more we relate our experiences in public, the more the rest of the world will realize that perpetuating treatment in the somatic box is a horses rear end thing to do.

 

[Abrin]

If little tiny microbes can take over a whole body because of sheer number, our voices and efforts individually combine to make a whole that's more than any one individual.

I love the visual image. If a plan of action comes to pass that my voice can be of assistance, please let me know.

Count me in 'the tiny army'.

 

[Seven]

1) is not that we don't want to pace, is that the circumstances of the desease don't allow you to. Since it is not a recognize desease, you get no money, one needs to eat therefor work, cannot afford care for babies so we have to be mothers! I got Cfs w a baby. Tell the baby sorry honey don't eat I am pacing!
2) since the medical community does not help either, is not like you can get a note from them to work and schools ( I am lucky but most are not).
3) why is it so hard for the psychology to follow the why model. Why don't you pace, why didn't you get a note from your doctor .....
Is not rocket science! to make up evidence instead of looking at the real root cause as of why we don't PACE