Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

geraldt52

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Mary, I can barely imagine the amount of time and effort it took for you to put that together. I'm afraid I can no longer manage such an undertaking...just trying to overcome the overwhelming sense that it may all be for nothing usually does me in. Thank you for a job very well done. Let's hope it touches at least one person at Mayo that can make a difference.
 

btdt

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Thank you Mary! This is one of those jobs that belongs to nobody and you did it :) and did it very well.

I was just reading a free online book before I looked at this post...

take a look at the contrast...
"I thank those people who have sought my help over the past decade for their health problems related to adverse effects of low dose chemicals on their health. The education provided to me by those brave, ignored, persistent, infuriating and inspiring people and their carers over thousands of hours has been a privilege. I have provided the time and the ears, while they have enlightened me with the stories which, taken together, have given me and my colleagues a unique insight into medicine, our society, and the resourcefulness of those people who suffer most in the name of progress. To those people I owe my deepest gratitude.

The story of multiple chemical sensitivities is a difficult one to set in a social context at present. The understanding is emerging, and the data which seemed to be lacking in the past are now flooding in. I will be satisfied if, after reading my contribution, a reader has his or her faith in regulatory bodies, manufacturers and medicine shaken. Growing up is often a painful experience in which blind faith must be discarded, and in which we seek the truth for ourselves. The truth, for me, is the people who see me and relate their all too similar stories day after day. It is not theory, experts, authorities of newspaper stories.

I urge and invite you all to lose your faith, and grow your own knowledge and understanding. Believe nothing I or others say without testing it against your experience. Then, do not doubt the truth you find, no matter what the “experts” say. Dr Mark Donohoe 2004
I know it is mostly about mcs but here he ties in cfs....

"Observations from an MCS watcher Dr Fluhrer, Dr Dobie and I opened the Special Environment Allergy Clinic in part to observe and record the health consequences of low level chronic exposure to toxic agents, and in part to see how we could help those people recover. It was a decision which would change my mind, my practice, and my professional life forever. In the clinic, we noted many things. Some were small things, like the tendency for our clinic patients to have a temperature about half a degree lower than those in the rest of the hospital. Some were big things, like major disorders of respiration during sleep, and mild brain damage. Some fascinated us, such as the tendency of toxic and chemically sensitive patients to develop evidence of liver damage after two days of a fast (we called this our “liver stress test”, though it was never popular for either patients or doctors.

The problem was eliminated by supplementing nonallergenic amino acid supplements during the fast). Above all, though, I recall two remarkable properties which bound the multiple chemical sensitivities patients in my mind. The first was the utter consistency of symptoms, the most important of which appeared to be neurological in origin. The second was that while their pathology and other tests were consistently abnormal, there was a remarkable inconsistency from patient to patient when we looked at the types, magnitude and direction of pathological alterations.

Symptoms and signs To my mind, there are a number of important and interesting factors which distinguish multiple chemical sensitivities clinically from anything I had seen before in my training. Firstly, there is a massive crossover between multiple chemical sensitivities and chronic fatigue syndrome in terms of symptoms and disability. I personally believe that they are different aspects of a single group of illnesses. My rule of thumb was simply that, if the person’s primary complaint was apparently triggered by chemical exposure, and heightened sensitivity to the effects of chemicals was a major, early onset and obvious component, the best description was multiple chemical sensitivities. Otherwise, chronic fatigue syndrome was the common diagnosis."

I don't know if he is right or not I don't know if all his findings are true... I don't know if his treatments worked I can't recall what they were if he had any... this book was written years ago and is free online... he says if there were demand for it he would write anohter.... I did intend to write and demand it but never did...
since you are such a great advocate it is a link you should have
https://static1.squarespace.com/static/54059cd8e4b09fa759f4c83f/t/5416a202e4b00f3a4f0de025/1410769410474/Killing Us Softly 1.3.pdf

it was the tone ... of the two different treatment places that jarred me... one seems humain the other does not...

Now if I am to live my life with a disorder that challenges me in so many ways already I would prefer to have some treatment... especially when I have to pay for it... some treatment that treats me with some respect from a person who believes what I say...

the difference is glaring to me...

in the end Mary it will matter how we lived... in the middle too... thank you again.
 
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Gingergrrl

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Thank you @Mary! Way to be a total badass! :fire::star:
I can only say, wow, and confirm that @Mary is a complete rock star :star::star::star:. Mayo has so much incorrect information on their website (not just re: ME/CFS but all kinds of things) yet they are taken as gospel by (most) of the medical community. Good for you for sending such an excellent letter and it only takes one person to change the world. Mayo has excellent labs for obscure blood work but then the info on their site is often so out of date or just plain incorrect and even dangerous. Excellent work, am so proud of you!
 

Neunistiva

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I'm just stunned. I didn't expect any response, much less the one I received. Well, will see if anything comes of it --
I think this may be a reminder to us all that physical letters still carry heavier weight than e-mails.

Thank you so much for doing this. Every time I try to enter a discussion my brain malfunctions, you must have been relentless. Truly a great job.
 

Oberon

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Thanks for a great read @Mary. The only think I might suggest which is ultimately up to you is to not necessarily continue to list the names of the doctor's you are corresponding with without their permission.

They may not be entirely happy about having their correspondence posted publicly and if they find out they may decline to keep the dialogue open with you.

Again just a suggestion and thank you again for the great read.
 

Jill

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I can only say again that the IOM report was under appreciated. Yes, it did propose an unsatisfactory and unvalidated case definition, but it got so many things right, it was really a huge step forward. It's hard to win against the BPS school until we get support from prestigious institutions such as the IOM.

If the IOM report is updated (they did say that their plans included a revision of the case definition within at most 5 years) please let's strongly support it. The case definition is going to be flawed anyway until the biology and the subgroups are clarified, and I would rather have SEID than Fukuda in the meantime. A definition like the CCC excludes too many people that also need help.

Anyway, excellent advocacy.
I concur with you that the IOM report was under appreciated. I used it in a similar letter to our major teaching hospital here in Auckland about their appalling lack of knowledge on ME. I got a great response eventually and was asked to speak at Grand Rounds. My partner now has two doctors - an endocrinologist, and a pain psychiatrist, both on the public system, on his side. It took a fight and many letters but both these drs now respect both myself and my partner. The clincher and what made them sit up was the IOM report.

Well done Mary!. It just takes all of us , being polite but firm and not backing down ( my friend called me terrier like :). At first I got the BS that the hospital has drs that saw patients with ME, which I batted back that we hadn't seen any that knew anything and they all admitted it. In the end the clinical director himself has taken Al on. Under my suggestion I got him to test for diabetes insipidious and he was shocked at Al's readings. (this was after two admissions to hospital for a "full check over". anyway, the upshot is that now Al can get out of bed and walk on the Desmopressin. He's gone from total dependency (1-2/10 to a 3-4 /10 which makes life easier for me and thankfully him!!! So don't give up Mary. If we all work in our small corners of the world I'm sure the next few years will bring bring big gains.
 
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Well done, @Mary. This is a nice alternative to the Crawley paper which could be worth flagging to any Mayo paediatricians you correspond with (if you haven't already!) - a paediatric primer published 19th June 2017:

http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full
Its authors are mostly American, e.g. Peter Rowe, but it also includes experts from the UK (Nigel Speight), New Zealand and Australia.

It's all kinds of fabulous.

It's well-referenced (199 references to Crawley's review's 52). It covers comorbid conditions such as orthostatic intolerance, joint hypermobility, gynaecological issues, gastrointestinal issues, allergies, neuroanatomic abnormalities, oral and dental issues. By contrast, Crawley's review briefly discusses three comorbid conditions: mood disorders, eating difficulties and obesity. It's very practical, and includes many resources like a fact sheet for schools, sample physician's letter, list of differential diagnoses, and an additional OI resource. It just oozes understanding of the condition.

(The Crawley review I'm referring to is Brigden et al's 2017 paper in Arch Dis Child entitled "Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood". I'm not sure if this is the same one the Mayo paediatrician sent to you.)

Let's share Rowe et al's 2017 paediatric primer/review as much as possible!
 
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Mary

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Thanks for a great read @Mary. The only think I might suggest which is ultimately up to you is to not necessarily continue to list the names of the doctor's you are corresponding with without their permission.

They may not be entirely happy about having their correspondence posted publicly and if they find out they may decline to keep the dialogue open with you.

Again just a suggestion and thank you again for the great read.
I thought of that myself after posting and have just removed the names and personal information. Very good point! But - if people have suggestions for further input to the Mayo Clinic, I'm very happy to pass it on. e.g. @Karen Kirke's link to Frontiers in Paediatrics paper is fabulous and I'm going to forward it to Mayo. Thank you @Karen Kirke!
 
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Old Bones

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I was just reading a free online book before I looked at this post...take a look at the contrast...

https://static1.squarespace.com/static/54059cd8e4b09fa759f4c83f/t/5416a202e4b00f3a4f0de025/1410769410474/Killing Us Softly 1.3.pdf

it was the tone ... of the two different treatment places that jarred me... one seems humain the other does not...
Thanks, @btdt , for providing the link to the article by Doctor Mark Donohoe. In addition to the respect and trust expressed towards patients regarding their lived experience with multiple chemical sensitivity (and also what he referred to as chronic fatigue syndrome), some of the content shows an understanding of these conditions that is quite remarkable, especially considering the article was written approximately 20 years ago. Here are a few excerpts:

"These tests, in total, suggested two things to me. Well, three things really. Firstly, we were not dealing with an homogenous, single disease entity. More likely, these people represented a group of disorders with common symptomatology, much as we had found in the closely related chronic fatigue syndrome.

Secondly, if one were not careful to divide this group up into appropriate sub-groups with common defining characteristics, the statistical assessment of the group would . . . fail to find real differences between these people and the “normal” population.

Thirdly, and for me most importantly, it suggested that we were finding stable states of health (or ill health) which were not subject to homoeostasis, or a return to “normal” function, any longer. I say this because the peculiarly individual “abnormalities” remained surprisingly constant over months or years, and had all the hallmarks of a stable adapted response. Whatever the original injury and damage, the expected recovery did not happen. . . . The temperature lowered into a state of mild hibernation, minimising physical demands of a system under stress. The person was not well, but was not as ill as they may otherwise have been. More importantly, they were not about to “recover” if recovery increased damage and shortened life."

"I learned that day that explanations based on indefinable (and essentially unprovable) psychological explanations are frequently our first answer, but are rarely our best."

"Specialists spend much of their time either squeezing hexagonal pegs into round holes, or finding no problems where clearly problems exist. Both these approaches cause immense problems for those with novel, challenging or emerging illnesses. In the “hexagonal peg” scenario, the problem is reduced to one which fits with the specialist’s training or interest. Failing to see the bloody obvious is less dangerous, unless the specialist is to give a report to a lawyer or insurer! Each approach can lead to gross errors, occasionally flirting with scientific fraud."

"Where causes are not easily found, we invent causes. . . . They need to make the majority of us comfortable that the causes do not apply to us. We need . . . a type of rubbish bin for medicine, where we dump the conditions and people who we either do not understand, or who make us uncomfortable. Psychology and psychiatry will do for now. These are pernicious bastard children of medicine. Ever ready with an explanation which fits the needs of the medical model, there is no escape for the people trapped in their prejudices."

I could continue quoting this excellent article, with content suitable for various threads. For example, the intervention of government and police in cases of parents trying to protect a child from the harm of chemical exposure -- similar to the recent BBC radio segment on parents of children with ME. I haven't finished yet, but consider the article well worth reading.
 

Hilary

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Great letter @Mary - courteous but incisive and no mincing of words.

I note that the doctor who replied refers to "long term tiredness"...... (If only.)... this seems to support the suggestion that the sort of rubbish churned out on the Mayo website (and countless others) is at least partly due to massive problems with diagnosis, some doctors apparently scattering it around like confetti, while genuine cases get overlooked. As you quite rightly detail in your letter, the vast majority of medics just don't know what they're talking about so inevitably the 'treatment' offered is utter tosh.