ME Association magazine summer 2019

[deboruth]

Neil, where do you get that idea about "once the initial illness has passed?" Maybe your "initial illness" has passed, but my pathogens like me so much some of them have stuck around for 30 years. Although I'd rather have that darling Cavalier King Charles Spaniel for company. Please send.
If you are sincere about your article being solely about your own experience you need to learn to control "voice" when you write. Your diction and syntax in this add up to a prescriptive "voice." In fact, at times you sound more like White & Weaselly then like a patient. You don't need to say "may" or "perhaps" to be personal. But more use of the first person and less of the second person would help. Also more honest sharing of your feelings and thoughts and less of prescribing for others. The 19th century pioneering psychologist William James advocated forming habits, but offered doing so as a well thought out protocol that could relieve patients' suffering by easing stress and simplifying tasks.

 

[Peter]

Dr. Montoya treatment sheet: Includes information about dangers of exercise, lab testing and antivirals.
From the paper: “Imagine that every time you crash, your immune system overreacts as a response…. As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.“
https://med.stanford.edu/content/dam/sm/chronicfatigue/documents/patient_care/managing_health/InstructionsforCFSPatients_20131004.pdf

Thought this was interesting to see in written. Though it’s not a proof or anything, ref what do we know/speculation and so on, I think it is important to stress the possible danger of push-crash in relation to patient experiences, development of disease and prognosis.

Intuitively it makes reason, and far more important, - I think this is exactly what many patients has experienced as part of push-crash almost no matter what. Don’t know the quality of Montoya’s explanation, and patients probably have no idea what is going on, but the essence and consequences of continuous push-crash are quite obvious. So why aren’t we (scientists) speaking more about that, speaking of the possible long-term danger of going down this route? We talk about avoiding total bedrest, the value of pacing and such, but the part of a continuously push-crash pattern is underplayed. No wonder something will “break forever” at some point. And that is exactly what many long term patients can tell. I managed a hundred, two hundred, maybe three hundred crashes, but then something more broke - the dynamics so to speak. Meaning that before that point, the patient actually had some dynamics in the disease, a kind of cycle. The patient provoced - had a crash and rest - then experienced some minor recovery back to baseline before provocation. That kind of cycle, only the slightest of what would be considered normal recovery, but at least it was some kind of dynamics there. But then, at some point, after pushing-crashing to many times, the dynamics snaps, shut down and “dies”. From then on the patient will constantly more or less live in a state of PEM, missing miss out on the chance of getting back or closer to “baseline”, as before provocation. And what then..? Won’t say that the chance of improving is gone forever, nothing can kill that hope, but well, the chance of many years where it is all about survival from day to day and pretty much nothing else is huge. So avoiding getting in a push-crash cycle and the possible danger of it should definitely be part of the narrative. Far to many know the consequences all to well. Total bedrest as the author highlighted, is a no go, though I don’t believe it actually is more than a minor problem, meaning numbers of people doing that. Push-crash is a no go, and that is on the other side a major problem.

Maybe only patients who experience the disease understand it, but I think it’s fair to say that avoidance of push-crash is essential, especially early on. Then it’s quite devastating thinking that this kind of quite basic advice can have significant impact long term, and knowing that we’re no way near this kind of knowledge in clinical practice, cause it don’t fit the truth of always trying to go at normal or very close to normal speed in every circumstance. But avoidance of push-crash would fit a 100% with the principle of minimizing or “do no harm”. Unfortunately the majority of patients are experiencing the opposite. Do understand that what patients experience are not the same as medical knowledge finding its way to medical textbooks, guidelines and such, but maybe medicine needs to actually listen to what patients can tell and actually look at the statistics and data for disease development and prognosis. Thats a lot to ask, but it would be in everybody’s interest. Every single patient would have a significantly better chance of improving and medicine itself would spend resources more wisely, contribute to actually getting patients better in every single way, health-wise and contributing in work and society like prior to disease.

 

[Esther12]

I'm concerned that answering your question is actually stepping into a minefield. So let me approach the answer this way. I will respect that you may not agree with my POV.

1. CFS and ME are not the same disease.

2. While I am aware that there is more than one criteria that uses the label ME - for the depth of science I refer back to the ICC and IC Primer.

3. I agree that there is very little evidence this CNS damage is an issue for those who only fit a CFS diagnosis

4. ME as per the ICC has information specifically about the CNS, so I believe it is reasonable to conclude that the ME patient group does have significant CNS involvement.

5. The ME patient population the ICC refers to is a select group of patients which means that making any blanket statement about whether this is happening in "CFS" inappropriate.

I would posit that the first scientific step in any disease is for the clinicians who have the most experience in the disease to come to a consensus about what the patient population looks like and what findings they as a group have seen independently.

I think the IC Primer is a valuable scientific resource that is too often overlooked. The clinicians not only came to consensus but included back up science for their assertions (see cited studies in the back).

While the statement made by Dr. Montoya is not specifically addressed in the primer, I consider his observations with his patient population viable for reasonable consideration and as the consequences for ignoring that information could lead to a lifetime of suffering, erring on the side of caution for the patient population who are known to have CNS involvement seems prudent.

I don't think it is a stretch of scientific information we already know about ME, to conclude that repeated pushing and crashing can lead to permanent deterioration of function.

Here is the link to the IC Primer - A search in this document using CNS and Central will bring you to specific information. https://d3n8a8pro7vhmx.cloudfront.n...national_Consensus_Primer_2012.pdf?1554817421

Thanks for that - its sounds like there really isn't any good evidence though.

re CFS vs ICC - you were citing Montoya's instructions for CFS patients, so I continued to use that label. In the case of this claim, it seems that we're lacking in real evidence supporting it for either CFS or ICC.

Those who devise different criteria can make different claims and have different ideas about the illness, but I think it's really worth focussing on what evidence is available to us. Without good evidence indicating that "the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover", then we should not assume that is true, whether for those diagnosed with CFS or ICC, especially given the importance of ensuring that the narratives about ME accurately reflect the science.

 

[Cinders66]

Key points are there wasn’t enough sensitivity and you do have to show some Afaic , made worse by inferring we who dared to complain are of “delicate disposition” in the defense, it was being prescriptive and therefore there must be caveats afaic, & the last comment just made me wince because of the constant blame we get generally about being responsible for our situation and able to Make it good if we really wanted or tried, our choice. Again I can see if you were musing to a friend regarding your own battles the above might be ok, or if it’s a specific audience of newly ill you were writing for, & I do think mea often see them as the audience, but it’s in a magazine for people in multiple scenarios, at multiple severities and there were many many concerned comments on an independent thread on a severe forum so i hope the mea take them onboard .

 

[TiredSam]

or if it’s a specific audience of newly ill you were writing for

I think it's an especially dangerous article for the newly ill to read, they need to be told to rest as much as possible rather than given a pep talk about attitude and getting up every day no matter what.

 

[dratalanta]

I was surprised to see Neil Riley's piece just as Greg Crowhurst's blog appeared on the MEA website describing Very Severe M.E.: https://www.meassociation.org.uk/20...mething-new-by-greg-crowhurst-16-august-2019/ .

I also note the MEA's own descriptors for Very Severe M.E.: https://www.meassociation.org.uk/wp...Severe-Disability-Rating-Scale-March-2019.png : "requires practical support... such as a hoist... with all aspects of personal care (i.e. feeding, washing, dressing)"

@NeilH - thanks for dropping into the thread. If you're still here, do you think that Greg Crowhurst's wife should "rise from her bed and walk"? If not, then why give that advice to patients in general, when for many, it is either impossible to follow, or will result in devastating PEM?

I welcome individuals' stories, but when the Chair of the MEA writes in that organisation's magazine, he isn't writing as an individual. The MEA has a duty to convey the needs of the entire patient community, including - especially - those most severely affected. If the Chair of the MEA can give general advice without taking Severe M.E. into account, we cannot be surprised if government, doctors etc. forget that the severely affected exist.