#MEAction - CDC revises its information on ME - by Jaime S

Excellent work Jaime s perhaps the cdc should employ you to do their job for them I wish. thanks you.

 

Thank you very much, @alktipping! As I say at the end of the article, I definitely leaned on other key advocates for context and ideas -- and of course I looked at and incorporated the conversation here on S4ME as well.

 

I hope they take notice of your excellent work @JaimeS and act on the points raised

 

Well written, @JaimeS. Thanks for doing this.

I think the CDC's emphasis on pacing gives a way to open up dialogue with certain healthcare providers. It's a starting point, at least.

Some providers still recommend standard exercise with no consideration for activity management or the individualization the CDC recommends.

 

We do plan on engaging in a more formal dialogue after checking out comments from the community; people had a lot of good ideas for additions. Even in discussing on the comments section in the article, I realized they didn't even mention to check for low:

• Vit D
• Iron
• B12

Not like it's a cure or anything, but there is decent, peer-reviewed evidence that all tend to be low in pwME. Why not start by testing for and addressing this? It's a super-cheap, low-risk endeavor that will instantly improve quality of life.

But I didn't list it because I was initially pointing out what had gone wrong in specific sections. We should focus, too, on what could improve the site that is not misrepresented, but totally absent.

@Webdog, exactly -- now we can say "the CDC says you're wrong to recommend this in my disease."

 

Of perhaps some relevance, from the recent expert clinician summit in Salt Lake City (bolding mine):

Personally, I would like to see LDN tried more often by doctors.

 

Fludrocortisone worries me, with the strange reaction 1/3 of us have to corticoids... rest sounds good though.

 

I don't want to derail the thread, but what's the weird reaction? I tried fludro and didn't feel at all well.

 

Multiple convos on this, which I will link @Sasha, but it boils down to: some of us have a 'neurotoxic' reaction to corticoids.

Mine is the most severe I've ever heard of, but a poor reaction in general is not uncommon.

I've reacted to ACTH stimulation testing (which is meant to prod the patient into producing more of their own cortisol) and hydrocortisone (10mg) the same way. Neurotoxicity is a good summary of what happened.

I had marked increase in orthostasis (room was spinning even though I was lying flat), and though I was making sense in the ER in terms of language, when the doctor asked me to explain what had happened, I told all the events out of order -- and some were missing entirely. (They would pop back into my brain in random order over the next 24 hours.) I developed a rash at the injection point of the ACTH, which was used to say I must have been allergic to the 'carrier' or something. When the same happened with oral hydrocortisone, I had to rule that out.

Most worrying of all, I had a shock-like reaction. My blood oxygen dropped into the 70-s, I felt freezing cold, and I went white. Couldn't stop shaking.

I was recently chided by an ME doc who said patients behave as though their own symptoms always represent the ME population as a whole, so let me be super-clear. I did a survey on PR in which 40% of patients replied that they, too, felt markedly worse after corticoids, being sure to title the thread in a neutral way to avoid attracting solely people who have bad reactions.* This is not a double-blinded trial or anything, but it is worrying. Komaroff wrote about 'adverse events' in ME patients using corticoids, so it seems he has seen it often enough in clinic to be concerned. Shortly thereafter, I was at a conference where a research team found the same for about 30% of their research subjects with GWI and had started investigating the same in pwME. This is something that appears to be the case for about 1/3 of patients, until we learn better.

At least as far as my tiny survey went, 1/3 of people respond positively to corticoids. So. We're all unique little snowflakes.

Finally, generally speaking, in the periphery, cortisol is anti-inflammatory.

In the CNS, it's inflammatory.

https://www.ncbi.nlm.nih.gov/pubmed/12562515/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691990/

If you already have CNS inflammation, more cortisol may be a poor treatment choice.
__________________

*If you have EVER taken corticoids (glucocorticoids, prednisone, e.g.) -- whether you had a reaction, no reaction, or they helped out -- please click on the link to the survey and add your info if you have a username on PR. FOR SCIENCE.

 

Thanks, @JaimeS, that's extremely helpful.

 

Magnesium is a huge one too.

 

Re: the Vitamin D suggestion --

Low Vitamin D correlates to orthostatic intolerance. I thought it was interesting, given that such a high percentage of pwME also have OI.

Trying to figure out if I can link a mechanism or not.

 

Yes; it is. Do we have peer-reviewed evidence saying so?

 

It messed me up. Weight gain, temperament, breakouts, and there are a lot of conflicts with other drugs. However, my BP was 80/50 and just sat there, so to bring my BP up they did not have much choice.

Unless one really needs it, I don't recommend it.

 

Still recovering function after hydrocortisone prescribed by endo in February. Up until then my daughter was making progress.
ACTH test went ok ( tired, dizzy and headachy after but could also be due to early start as body clock out of sync) . Test found slightly low base cortisol which prompted the hydrocortisone.
Concentration slowly coming back, skin improved ( was horrendous) but headaches, muscle and Joint aches and sleep still out of whack.
Sadly endo didn' t bother to read a couple of things i' d emailed and i simply assumed he had .... lesson - never assume

 

Hey, folks. I added a pdf version to the article for those of us who like to print stuff out and read it off of the screen. Always intended to but ran out of energy. Hopefully added accessibility now!

 

That’s excellent; many good points. Thank you!

I don’t know if you’re still collecting points but here are some items I noticed offhand:

It’s not best practice to say “wheelchair-dependent” (also not at all ok to say “wheelchair-bound”). It represents wheelchairs as a burden and a limitation, rather than as they are in truth (supposing one has the correct kind: if it’s manual they have the arm strength and stamina to wheel it themselves, which would imply most pwME need electric wheels): a device empowering choice of movement, much like a motor car.

Also comparable to eye glasses: you get them as soon as they begin to help and don’t worry that “they will make your eyes weak:” that’s an outdated folklore. Same deal with wheelchairs. They will not make you atrophy (good grief, it would take an actual cast to do that: news flash, even with ME, I recovered fine from atrophy after wearing a cast on my broken arm, and without PT, too), and they will generally not cause other ill effects. Usually good effects.

Also the SSA definition of homebound is

https://www.medicare.gov/coverage/home-health-services.html

This “partially homebound” nonsense may prevent doctors from certifying people as homebound because “you come to the office sometimes” (this is happening to me, fwiw).

Shortness of breath on minimal to moderate exertion is a medical qualification.
https://aspe.hhs.gov/basic-report/c...cessity-using-oasis-data-final-report#execsum

I do understand that there are severe/very severe patients who can’t even occasionally get to the clinic and I agree there needs to be more emphasis on this group. This is a real thing, it’s not exceptional, and someone needs to be looking out that they’re included.

Preferably in their own words (some occasionally improve enough to make a blog post or video). But by carers if that’s the best we can do.

 

I wonder whether “wheelchair-dependent” is actually better here. It seems to suggest it is less of a choice, that someone needs it. With “wheelchair user”, it sounds the individual has simply chosen to use it.

 

People who use the term “wheelchair users” are overwhelmingly disabled people, including people who are visibly disabled. I think this association would help the point you’re trying to get to, not hurt it.

People who say “wheelchair-dependent” tend to be people who are chronically ill and new to the idea of being disabled (whether because new debily or because been focused on illness issues rather than access and device issues), or people who are not themselves disabled and don’t understand how a wheelchair could improve independence and mobility.