Livestrong: 5 Tips for Maintaining a Fitness Routine With Chronic Fatigue Syndrome

This article reads like they started with good intentions, interviewed Dr. Holladay (who from the looks of his website is someone who understands ME/CFS better than 99% of doctors out there), but then in the process of writing the article and then editing it for the web, it just devolved into the half-nonsense slew of drivel that was published.

To me the most offensive part is the photo caption that says:

Which is unsubstantiated by anything elsewhere in the text.

I wonder if Dr. Holladay would want to be associated with some of the statements made in this article. Pretty disappointing.

 

It appears that the writer has used quotes directly from him though:

"Those who are severely ill may not be able to safely do any regular exercise," Dr. Holladay says.

this may have been taken out of context but it appears to infer that non severe patients can, which conveniently fits with the GET guideline

he is trying to encourage patients to exercise even when it is problematic

. "By sitting or reclining, they are reducing the strain from reduced blood flow so that their bodies can better tolerate limited exercise," Dr. Holladay explains.

he also recommends aerobic exercise:

"I generally prefer the stationary pedals or recumbent bike to a regular upright stationary bicycle because the regular bicycle puts them in a more upright position," Dr. Holladay says,

His website has confused information on it IMO and it’s not clear whether he is a chronic fatigue specialist that does a few PWME or whether he is more interested in POTs. It doesn’t come across as particularly targeted.

I would also be interested to find out if he has been misrepresented ...the editorial as mentioned is quite moralistic/dogmatic/preachy and shows quite a lack of empathy ..I wouldn’t be surprised if the writer completely ignored what they researched in their enthusiasm to ram an ‘exercise is good’ homily down their readers throats

 

I really struggled to work out what was going on - blooming brain fog didn't help.

Pre ME my typical exercise included a little horse riding - I was just getting back into that, swimming 2-3 times a week depending & strong muscle toning workout 2-3 times a week depending. Generally, I alternated swimming with muscle toning and always had a minimum of a day off in between, sometimes two, rarely 3 unless I was on a big project or something. I didn't class walking as exercise really.

Swimming quickly fell by the wayside. I just couldn't get through the warm up phase at all and felt dreadful afterwards, really incredibly ill. I also had episodes of sudden loss of power to one or more limbs. Being in the middle of a pool out of your depth doing a forward crawl and suddenly losing power to an arm isn't funny. Or getting out and then finding yourself too weak to dry and dress yourself.

The muscle stretches and toning morphed towards a very gentle form of yoga & I managed to do that for several years. If I was careful. However, yoga with reps would result in horrible pain and muscle weakness & signs of that could be delayed by up to 3 days.

Horseriding went almost immediately. I'd get off the horse and suddenly find I lost power in my legs, I could move them but didn't have the strength, control or accuracy to be able to drive home.

Strength wasn't a problem. I was surprised at how long I retained muscle strength despite not being able to train. For example 10 years or so into my illness, aged about 40, I was physically able to lift something that my 15 year old niece couldn't. I couldn't lift something light repeatedly though.

Repetition triggered that almost sharp, vicious muscle pain that is made worse with movement. Pre ME muscle pain post exercise was eased by gentle movement.

In hindsight anything aerobically challenging was quicker to cause a more generalised feeling of being very ill, sore and swollen glands, feeling feverish, headachy, poisoned and so on.

Walking post ME - everything depends on the pace. Standing hurts more than walking and can result in faintness, dizziness. Walk too slow and balance problems start and it can really hurt the thighs and muscles in the rear, too fast and there may be dizziness, loss of balance too with the added delight of post aerobic symptoms.

 

In my experience all livestrong 'articles' are like this, very 'surface' and generic - sort of like astrology applied to health - Generic statements that will apply to most people. That to anyone who doesn't know better, or think, seem sensible.

You lot are only spotting it coz they have now posted something in your area of 'expertise' - but all, that I have seen, of their 'articles' are like this.

Could have been generated by an AI picking random phrases from a 'reading list'.

 

Invisible Woman said

ME has been described as being able to lift a bag of potatoes over your head once but collapse trying to lift a spoon to your mouth over and over.

A rheumatologist told my MIL to make sure she moved every joint once a day if she was able so that she could keep a full range of movement and that is probably good for us if we can manage it. No repetitions unless you are very sure you can do it.

Keeping joints moving in RA has a definite purpose as patients can have joints that become fixed which leads to disability; too often the advice for ME patients is that given to the average couch potato and shows they think we are just plain lazy.

If they were serious about helping us become more active they should not be starting with exercise but the activities of daily living. The Workwell Foundation has advice that is tailored to our disease process. They encourage using aids to make save energy and things like doing a little bit at a time with rests in between.

They should state their aims explicitly, not a banal "exercise is good". In MS they recommend water exercising and locally there are classes held in the swimming pool of a school for disabled children which is kept warm and has hoists and helpers. If they prescribe water exercise for people with ME, everything should be done to save energy being needed for anything except the actual water work. Warm water, helpers, sound kept to a minimum, even transport provided.

What is suitable for healthy people does not translate into good practice for those with a disease especially a disease like ME. It can seem like they keep encouraging us to exercise precisely so that we will fail and they can then claim we are not trying.

 

This is definitely true. Even when much more mildly affected a yoga teacher, thinking she was helping me by getting me to move into and out of asanas far too many times, struggled to understand when I told her, 3 reps tops- 2 of which are warming up to the pose and one remaining in it & I'm done & resting on the floor.

She was confused because once I was in the asana properly I could comfortably hold it for longer than some of the class who didn't have ME.

People make an awful lot of assumptions about exercise & what's appropriate for other people without actually asking those people what works best for them.

 

https://twitter.com/user/status/1358517099602341890

 

'Experts' in what, exactly?

Possibly an expert in plumbing, or maybe how to grow oranges, or even forensic accounting.

Coz without some idea of what they are claiming expertise in, and its relevance to the subject being discussed, what 'experts' say may actually be a strong indication of the lack of relevant expertise of the person saying 'Here's what experts say'.

 

"But this article was sent to me. Thought it would be helpful post Covid"

Sheesh. She really is taking the mickey now - she can not possibly think that, after everything she has been told by sufferers about their lived experiences. (She has said she believes in 'lived experiences', right?)

I wonder 'who' sent it to her?

Awful, unprofessional behaviour for someone of her status.

 

Clearly just trolling but it's rarely a sign that one is winning when despite having enormous influence as a professional they are playing dumb on purpose about a topic they have been claiming expertise for decades. So at least there's that.

I wonder how it plays. She's obviously playing dumb on purpose, I doubt anyone who knows and follows her can't see it. Using a Livestrong article as evidence for such generalized claims as a former head of a large GP organization is beyond embarrassing. Completely unprofessional behavior. Is the culture of medicine so broken that people will just wink and nod it? Good grief. That's always the thing, it's not the behavior itself, it's that it's accepted and promoted by others who should and do know better.

 

The illusion of knowledge.

 

Oh wow. She would love this too, just saw it today (found it because of the keywords I follow in Google news):

How To Understand If Your Teen Is Battling Chronic Fatigue

https://www.moms.com/understanding-chronic-fatigue-teens/

This article doesn't even bother not to contradict itself. (I know, moms.com, but I wouldn't be surprised if she found this very helpful too. For teens! Post Covid!)

 

Got a response to my complaint from the ME Association:

 

Are you referring to the one that uses a hashtag?

 

Don’t think I follow you, sorry. Might just be my brain fog though .

If you’re wondering which is the account I referred to, it’s https://twitter.com/meassociation.

 

Well done @jonathan_h.

Honestly, sometimes silence is the best policy MEA.

I appreciate mistakes can be made but it really isn't okay to respond to articles like this without thinking it through. You can always respond later if there's no one available to respond quickly.

Someone might read this or Gerada's retweet and get completely the wrong idea & then start applying pressure & judging the person in their life with ME.

 

New article! And no, I think you don't want to know but in case you are in a bit more masochistic mood:

6 Ways to Cope With Chronic Fatigue Syndrome

It is quite detailed but in short:

- seek the correct diagnosis
- address sleep problems
- eat a wholesome balanced diet
- drink water throughout the day
- amp up your exercice
- cut down on stress

No mention of pacing but this is what it says about exercise:

"Research, including one July 2011 study in Current Pain and Headache Reports, has shown that regular exercise can help ease symptoms related to FMS, a condition very similar to CFS. Because pain is a common symptom of both conditions, some exercises may be better tolerated than others, including lower-impact activities like yoga, pilates, water aerobics and bicycling.

"Light exercise five times per week with a goal of 30 minutes each time may be a good start," Dr. Gangani says, and suggests gradually increasing the intensity of your sessions as long as it doesn't make your symptoms worse."
​

About stress:

Dr. Medalie agrees, adding that thinking excessively about problems and putting your system constantly into "fight-or-flight mode" from elevated stress can take enough out of you to feel significant fatigue.​

Well, all I can say that this article probably doesn't help too much in cutting down stress.

https://www.livestrong.com/article/13731523-how-to-cope-with-chronic-fatigue-syndrome/