Mobility Scooter!

[SOC]

I haven't self-diagnosed myself. I've had the full battery of blood tests required for a referral to a CFS clinic done twice now. I tick the CCC boxes for a CFS/ME diagnosis.

I could go back to the doctors and try a clean sheet diagnosis, but I feel sure the result would be the same.

I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.

I just don't understand why you can't accept what I'm saying, and always dismiss me as not having the same illness.

Apparently you don't tick the box for PEM, which is a required feature for an ME/CFS diagnosis.

No one is arguing that you got a "CFS" diagnosis in the UK. Many docs there use the Oxford definition, which does not define the illness we refer to here at PR as ME or ME/CFS. Sadly, doctors rarely do enough testing to eliminate other fatiguing illnesses before they slap a CFS label on people.

Have you been adequately tested for various forms of dysautonomia, for example? Your symptoms sound much more like dysautonomia than ME/CFS. Dysautonomia can result from a number of conditions, of which ME/CFS is one, but dysautonomia without other defining symptoms of ME/CFS is NOT ME/CFS.

This might help: Clinical Evidence of Dysautonomia

I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.

This suggests some type of exercise intolerance, which is not PEM. In many cases, exercise intolerance is treatable.

If you don't want to accept long-term disability, then don't accept an ME/CFS diagnosis. I don't see why you want to hold onto a diagnosis which means long-term disability when the alternative is to seek out alternate diagnoses that are likely to be treatable. Wouldn't you rather be treated and get on with your life?

 

[Artstu]

If you can't understand that exertion makes us much sicker, than I can't fathom how you could have ME. Any exercise either comes at the expense of other, more necessary, daily activities, or it triggers intense disability lasting for days or weeks.

I agree in part. However I believe it is possible to reduce the impact eventually.

We feel a bit better when we rest more. We feel much worse if we try to push our boundaries, at all. If that isn't happening to you,

I agree with that too, and it does happen to me also.

 

[Artstu]

As if we are ill because we are unfit, This is so wrong.

I agree, I'm not saying that at all.

Doing small tasks around the home is my only way of keeping joints and muscles working at present, I can't manage walks as well but when I get over this bad period I will start doing 100yds again and so on .

I do a little, say put the laundry in the machine and then rest, if I have a shower I sit down for at least half an hour to an hour before attempting to do anything else, I try to listen to my body, but even so it sometimes just screams at me STOP. At which point I cannot move from the chair for some time. This is what most ME patients do - its our own way of pacing.

Some ME patients do work but they spend most if not all of their rest days on the sofa or in bed.

I presume you were sicker and got somewhat better.

I have to do all that too. I have improved through exercise, I'm still ill, but being fitter helps me cope better with the illness.

 

[Artstu]

Apparently you don't tick the box for PEM, which is a required feature for an ME/CFS diagnosis.

I believe I do.

If you don't want to accept long-term disability, then don't accept an ME/CFS diagnosis. I don't see why you want to hold onto a diagnosis which means long-term disability when the alternative is to seek out alternative diagnoses that are likely to be treatable. Wouldn't you rather be treated and get on with your life?

You make it sound like I have a choice.

 

[Sushi]

I believe I do.



You make it sound like I have a choice.

You have a choice but it would probably mean going outside of the UK health system. Difficult and costly but may be worth it if you can discover some "treatable" things.

Sushi

 

[maryb]

@Artstu
I'm glad to hear you've improved that's what we all want after all.

 

[Artstu]

@Artstu
I'm glad to hear you've improved that's what we all want after all.

Thanks. That's all I'm trying to share here.

 

[SOC]

I believe I do.

Do you understand the difference between unexplained fatigue, exercise intolerance, and PEM?

Do you have "Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms"? Do you have "prominent symptoms primarily in the neuroimmune regions" as the result of exercise? Does your relapse from exercise last days, weeks, or longer? These quotes from the International Consensus Criteria for Myalgic Encephalomyelitis describing what we call PEM. Do you get flu-like symptoms from exercise? Does it take weeks to recover from exercise? If so, how are you managing high intensity bike riding with any degree of regularity?

This is exercise intolerance (from Wikipedia):

Exercise intolerance is a condition where the patient is unable to do physical exercise at the level or for the duration that would be expected of someone in his or her general physical condition, or experiences unusually severe post-exercise pain, fatigue, or other negative effects. Exercise intolerance is not a disease orsyndrome in and of itself, but a symptom.

Since there are many possible specific reasons why exercise could be inhibited, this is a rather slippery term. For instance, the patient may experience unusual breathlessness (dyspnea), muscle pain (myalgia), or increasing muscle weakness while exercising, or may, after exercise, experience severe headache, nausea,dizziness or extreme fatigue. In most cases, the specific reason that exercise is not tolerated is of considerable significance when trying to isolate the cause down to a specific disease.

You make it sound like I have a choice.

You do have a choice. You have a choice to investigate whether you have a serious illness that is causing your problems but may be treatable. Why would you not want to look into it?

 

[Artstu]

I don't much subscribe to labels that sufferers hang on to like PEM, most seem to want to name every symptom as justification for the way they feel, and if you want to do that then fine. I prefer to view symptoms as an exaggeration of normal responses to things. Repeatedly exercising has in my case lessened the effects of what you want to label PEM.

It's amusing that you should suggest I have exercise intolerance when you know I have the ability to exercise to a high intensity. It simply doesn't fit with my symptoms.

Of course I wish I had a treatable illness, so I could get my life back. I'd rather not of course have any illness. ME/CFS IS sadly the illness I have.

Someone suggested I accept I'm different than other sufferers, of course I can see that. What I'm asking is that you accept what I can do is possible with this illness. I also genuinely believe other sufferers can achieve what I have achieved, which comes back to closed off thinking.

So yes perhaps I have indeed found The Holy Grail as someone suggested.

Apologies again to Valentjin.

 

[Little Bluestem]

Ladies, Ladies, please.......... There's enough men for all of us. Well not really but I had to say that.

It's not so much a matter of quantity as quality. Mr. Valentijn and Mr. maryb sound like a couple of the good guys.

 

[Little Bluestem]

I would doubt very much there exists a study looking at folk with ME doing exercise for 6 years.

I doubt very much that there is any kind of study looking at folk with ME for 6 years. We do not get that kind of time and attention.

 

[Valentijn]

Repeatedly exercising has in my case lessened the effects of what you want to label PEM.

Then it isn't PEM, and it isn't what we label as PEM. You are incorrect in calling it PEM, though that certainly isn't your fault with all of the horrible things they've done to the definition of ME/CFS in England.

At best (or worst?) you have atypical ME/CFS, lacking PEM. That doesn't mean you're not part of the community, etc, but you really need to comprehend that exercise does not help us at all. It's harmful for patients with typical ME/CFS.

Consequently, please understand that your experiences regarding exercise are not applicable to the typical ME/CFS patient experience. Hence it can be very harmful if a typical ME/CFS patients makes a misguided attempt to duplicate your efforts.

And don't worry about the thread hi-jack ... it's an important issue!

 

[Artstu]

With the greatest respect I disagree entirely with your thinking. I think it best that I leave it there and bow out again.

 

[MeSci]

I think it would be really helpful if @Artstu listed his symptoms, including those that are exacerbated by exercise, and put some info in the Information section of his profile as many of us have done. That way we can look at each other's posts in the context of their symptomatology and decide whether their experience may be applicable to us.

I think that most people on here have detailed their symptoms at some point, but I don't recall Artstu listing his. Not being nosy, but it can be difficult to make sense of some postings without that kind of info.

 

[Hell...Hath...No...Fury..]

I've never heard anyone call PEM a label we've given ourselves before and sounds like something a CBT clinic would say. PEM is just a fact for people with ME.

 

[peggy-sue]

PEM is the defining feature of ME; it is the strangest and most illogical of things - completely at odds with normal physiology - comprehensible only to somebody who has it or who has measured it in somebody.