Who has done 2-day CPET?

[Tired of being sick]

The way I see it, if each test does not last for 8 full hours,well then it is irrelevant.

There is no possible way that a 1 hour test can mimic an 8 hour work day, both mentally and physically,especially mentally..
Mental breakdown fatigue in my experience comes just as fast as physical break down if not faster.
Actually, I find this test quite offensive and cruel..

All for SSD/SSI administration to play meaningless games with the demising well being of the sick, all for benefits that make sure you can an will never enjoy life again, financially ..
Ends still will not meet..
In fact I cannot fathom one single reason as to why anyone would want to live below poverty on purpose...

Can you?

Now,
Those who paid into the system being eligible for disability.The benefits are already yours!
No pun intended on SSI claimants.
Everyone in your family's work history payed into the the system for you .The benefits are already yours as well!

SSI is actually a better benefit for CFS/ME,because of the unlimited no out of pocket expense of medicaid, for the fact of the poor health treatment available keeping you on a constant quest looking for something that actually helps..

Can't do this on medicare,it would bankrupt you within a year.

 

[Keela Too]

Dr. Chris Snell has done a long presentation about the CPET in PWME in Bristol (?) last year, the video of which is on Youtube.

It was Dr Mark VanNess who came over last Feb to speak in Newry, Belfast and Bristol. This is the u-tube video from his Bristol talk:

I also wrote about his visit to N.Ireland, where he spoke to health professionals and MLAs at Stormont (our Local Assembly in Belfast) and also to patients in Newry:
http://sallyjustme.blogspot.co.uk/2014/02/dr-mark-vanness-in-northern-ireland.html

The event was highly informative and he presented some of the material from the paper that so clearly demonstrates our differences from deconditioned controls.

 

[Keela Too]

I have to admit, I have thought about this 2 day test, and NO WAY would I risk my future health to do it.

Perhaps I have a more reactive form of ME, but every loss I've sustained due to some mild over exertion has never been recovered from. A 2 day exercise test, I suspect would reduce me to being bedridden....

 

[SDSue]

@NK17 Thanks so very much for your informative response.

I'm so sorry to hear of your flare-up and hope that you can climb out of it soon. The Occupy CFS author (@Gingergrrl recommended above) reported that it took her about 2 months to return to baseline. I surely hope you follow the same pattern!

It's crazy how we, in our complete functional impairment, worry that we'll "pass" the 2-day and not show abnormalities. ME/CFS is simply beyond comprehension for me, even while I suffer greatly with it. It defies all previous knowledge and experience I had regarding illness, and has caused greivous self-doubt in addition to everything else.

*This morning, I spoke with the CPET administrator. It looks as if I'll be submitting to the torture in early November. If I had a better choice, I'd take it. It's either prove my disability or starve and go without health care. Such is life with ME/CFS - it just keeps taking. And I just keep fighting!

 

[golden]

@golden If you call Jarod at the Workwell Foundation he might be able to tell you other places where the two day test is offered. It is a long shot but only thing I can think of. His ph# and email should be on their website.

I spoke with him several times many months ago and was going to do the test but my former cardio and naturopath who were my main doctors at that time both felt I was not well enough to do it so I did not proceed.

Thanks G

I have emailed.

If I should come across any info. I will post it. But I am not actively seeking it.

I am happy to hear you were supported in NOT doing this test.

Its so tempting to PUSH for proof. Something on a bit of paper to confirm what we live through.

But its not worth damaging ourselves for it.

And I suspect our bodies take a long while to trust us again after it. After we ignore its distress calls to us.

 

[Keela Too]

. It's either prove my disability or starve and go without health care. Such is life with ME/CFS - it just keeps taking. And I just keep fighting!

This seems so wrong. It's one thing to say the 2 day CPET test is a useful means of showing differences between controls and ME folk... quite a different thing in my view to impose a potentially damaging test on some-one to make them prove they are ill enough to get benefits.

The irony being that an individual could be measured as XX level of disabled, only to end up much worse because of the test. THAT in my view is not acceptable. The act of measuring should not alter the measurement itself!!

 

[golden]

This seems so wrong. It's one thing to say the 2 day CPET test is a useful means of showing differences between controls and ME folk... quite a different thing in my view to impose a potentially damaging test on some-one to make them prove they are ill enough to get benefits.

The irony being that an individual could be measured as XX level of disabled, only to end up much worse because of the test. THAT in my view is not acceptable. The act of measuring should not alter the measurement itself!!

I think it often can though, particularly with M.E.

Scans even with radiation may cause more problems for us with low glutathione levels.

Dyes we maybe more susceptible to with MCS.

Even the pots tests are affecting people negatively.

'Challenging' is an aggressive term to our ailing bodies which are doing their best to keep homeostasis.


Here in the UK if you can raise yourarm above your head you are fit for work.

I was asked at the job centre am i capabke if lifting a phone receiver to answer it - therefore i was fit for work.

Its way beyond ridiculous.

 

[Tired of being sick]

@SDSueIn my own opinion of course.

We worry we might not pass any test that involves the SS administration's judgement..
For the fact that their judgement is moderately biased and can be critically unfair..

So it is perfectly natural to be worried about what their judgement might be..


The trick is not to show it..


I know it is very hard to do this but we must be strong because we all know how many ways they can use our fears against us..
Lawyers have specifically told me that
"My clients who deserve disability the most seem to be the ones who are not awarded SSD/SSI the most or have to fight the hardest."

So what does this all tell us?

People who are sociopathic are practically a shoe in for being awarded SSD/SSI

Why?

Because they can play the cruel game by their own nature.
Could this mean that the SS administration's own judgement plays by the same sociopathic game's rules?

But since we are not sociopathic, the only thing we can do is fight with persistence and wear a face of confidence.
Never give up the fight for hope..

We know coming in that the football game is rigged and we are 21 point underdogs..
However we do not have to win the game outright in order to win.
All we have to do is cover the spread losing by less than 21 points


.

 

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

Jarod from workwell replied this morning, he doesn't knowof any labs in the UK conducting CPET, he said to get in touch with Dr. Rudd Vermeulen in the netherlands to see if he can advise.

But it looks like there's not much for UK peeps on this front :thumbdown:

 

[Keela Too]

@Hell...Hath...No...Fury.. That has been our experience too - I'm in N.Ireland (part of UK) and I know that folk seeking a 2 day CPET test have been turned down. There are the facilities - because CPET testing is a standard cardiac or sporting test (my healthy athletic daughter has had one done) but no-one seems to want to take on doing 2 day tests on ill patients. The risk of making them worse may be the problem?

Regarding ESA and DLA (changing to PIP in some areas) - I was turned down for both of these initially. As @golden says above the ESA "medical" is a joke. Luckily my doctor (and a private consultant I saw) were outraged enough to write strong letters in my support and I now receive ESA (support group) and high rate mobility DLA.

 

[golden]

Update:

Jared Stevens at the Well(something foundation)

Does not know of UK locations for this test.
Very kind of him to respond.

He did link me to a Netherlands Doctor:

Ruud Vermeulen

To see if he can oblige.

If anyone emails before me, please share.

For some reason i think @Mark @johnathonedwards @charlesshepherd know the answer???

 

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

@Keela Too yeah there's definitely the facilities, i did consider doing a one day one but decided there wasn't much point killing myself for nothing.

Thankfully i dont need it for benefits, its just something i'm interested in doing. It would be great to have the option, without emmigrating

 

[golden]

Jarod from workwell replied this morning, he doesn't knowof any labs in the UK conducting CPET, he said to get in touch with Dr. Rudd Vermeulen in the netherlands to see if he can advise.

But it looks like there's not much for UK peeps on this front :thumbdown:

Thanks HHNF!

Three times i was on this thread and not once did it show me your post until i posted my repky from jared.

My tech often does this... misses out posts or posts them in the wrong order.

 

[Gingergrrl]

@NK17 Thanks so very much for your informative response. I'm so sorry to hear of your flare-up and hope that you can climb out of it soon. The Occupy CFS author (@Gingergrrl recommended above) reported that it took her about 2 months to return to baseline. I surely hope you follow the same pattern!

This morning, I spoke with the CPET administrator. It looks as if I'll be submitting to the torture in early November. If I had a better choice, I'd take it. It's either prove my disability or starve and go without health care. Such is life with ME/CFS - it just keeps taking. And I just keep fighting!

@NK17, I am so sorry how much you have been suffering since the CPET test and hoping you will feel better soon. Forgot if you asked your doctor this, but can you try IV saline?

@SDSue I have mixed feelings about you doing the test in Nov as I don't want you to risk worsening your health but I know you need it for disability. Does your doctor feel you are able to do it medically or is it more your attorney is pushing for it?

Even though my doctors at the time (different than my current Drs) felt I was not well enough to do CPET, I did later end up doing an exercise echocardiogram. The results showed an abnormality which led to further testing (which then ruled out cardiac blockage, etc.) I was just curious, does CPET give you info like that which could be useful for further testing? My exercise echo (treadmill test) ended up being eight minutes and was torture but it was NOT at my maximum effort and it was a one time vs. two day test. I really worry about you guys pushing yourselves to max capacity two days in a row.

Lawyers have specifically told me that "My clients who deserve disability the most seem to be the ones who are not awarded SSD/SSI the most or have to fight the hardest."
So what does this all tell us? People who are sociopathic are practically a shoe in for being awarded SSD/SSI.

Why? Because they can play the cruel game by their own nature. But since we are not sociopathic, the only thing we can do is fight with persistence and wear a face of confidence. Never give up the fight for hope..

@Tired of being sick I agree with you on this one and in the end, I still believe it is better to be honest and fight with persistence as you said than to try to play from a sociopathic position.

Jarod from workwell replied this morning, he doesn't knowof any labs in the UK conducting CPET, he said to get in touch with Dr. Rudd Vermeulen in the netherlands to see if he can advise. But it looks like there's not much for UK peeps on this front :thumbdown:

@Hell...Hath...No...Fury.. and @golden I am so glad you reached Jarod at Workwell and he is a nice guy. It is too bad there is no CPET in the UK but maybe the doctor in the Netherlands can steer you in the right direction. CPET for ME/CFS seems to be relatively new in the US, too.

Initially it was only Pacific Fatigue Lab (in CA) doing this research (they have since been re-named as the Workwell Foundation). The only other places I know of are Betsy Keller in Ithaca, NY, and a few of the CFS clinics like OMI and INIM. There may be others and I am just not aware of it?

Lots of facilities will do a one-day CPET but that is not useful for the info we need for ME/CFS testing to show PEM, etc.

 

[SDSue]

This seems so wrong. It's one thing to say the 2 day CPET test is a useful means of showing differences between controls and ME folk... quite a different thing in my view to impose a potentially damaging test on some-one to make them prove they are ill enough to get benefits.

The irony being that an individual could be measured as XX level of disabled, only to end up much worse because of the test. THAT in my view is not acceptable. The act of measuring should not alter the measurement itself!!

I agree wholeheartedly. It IS wrong. It's horribly wrong. But for those of us with zero support and living alone, it's often the only choice we have.

The US system for disability is not easily maneuvered nor are claims readily approved. Unfortunately, the 2-day CPET is sometimes needed when all the other clearly abnormal tests (TTT, blood work, sleep studies, etc) result in a claim being denied. Even with the 2-day CPET, there is no guarantee of approval. All I can do is fight with the tools available, and the 2-day is the best we have at this time.

Until the system changes and recognizes ME/CFS, many of us will continue to undergo this horrific test to prove our disability. (It sounds as if the UK is even worse? @golden - I'm sorry to hear of your struggle. )

Lawyers have specifically told me that
"My clients who deserve disability the most seem to be the ones who are not awarded SSD/SSI the most or have to fight the hardest."

I fear that you are correct - those who need it the most fight the hardest.

The worst part of this disease is the fight. We often fight with family, then doctors, then employers, and finally disability panels - all to prove how ill we are. It's cruel at best, and masochistic on the part of disability judges at worst.

I'm tired of fighting, and fighting is taking a huge toll …. but I haven't a choice.

 

[*GG*]

@Hell...Hath...No...Fury.. That has been our experience too - I'm in N.Ireland (part of UK) and I know that folk seeking a 2 day CPET test have been turned down. There are the facilities - because CPET testing is a standard cardiac or sporting test (my healthy athletic daughter has had one done) but no-one seems to want to take on doing 2 day tests on ill patients. The risk of making them worse may be the problem?

If the above Bolded is true, then why do they prescribe GET?

GG

 

[Valentijn]

Even though my doctors at the time (different than my current Drs) felt I was not well enough to do CPET, I did later end up doing an exercise echocardiogram. The results showed an abnormality which led to further testing (which then ruled out cardiac blockage, etc.) I was just curious, does CPET give you info like that which could be useful for further testing? My exercise echo (treadmill test) ended up being eight minutes and was torture but it was NOT at my maximum effort and it was a one time vs. two day test. I really worry about you guys pushing yourselves to max capacity two days in a row.

Yes, the CPET gives some heart related info. Some people have blocked bundle branches, long QT, etc. Mine showed a combined T + U wave.

 

[Valentijn]

Lots of facilities will do a one-day CPET but that is not useful for the info we need for ME/CFS testing to show PEM, etc.

One-day CPET is enough to show disability. 2-day CPET merely adds some indication of ME pathophysiology, and rules out deconditioning as a cause.

One-day CPET is already used to evaluate lung and heart patients for disability and such, but then they also have lung or heart exam results showing related pathology.

 

[SDSue]

Update and Good News!

Five days prior to my scheduled 2-day CPET, I received a letter granting approval for my disability claim. Thus, I did not have to submit myself to the test. The timing could not have been better and I am thankful and relieved.

I'm hoping to hear you've climbed out of your crash, @NK17.

 

[NK17]

Update and Good News!

Five days prior to my scheduled 2-day CPET, I received a letter granting approval for my disability claim. Thus, I did not have to submit myself to the test. The timing could not have been better and I am thankful and relieved.

I'm hoping to hear you've climbed out of your crash, @NK17.

I'm so happy for you @SDSue! These are really good news!! I propose a virtual toast to your victory, electrolyte would do in place of wine .

I'm still in crash land ... never thought it could get this bad, I've always been an optimist, but I have to admit that ME is a true Beast.