M.E. and exercise – when will they ever learn?

[Min]

He has a mobility scooter for half the distance.

 

[alex3619]

We have different information.

I do think though that walking challenges, bike rides, from sick patients is bad public relations. A much better one would be staying in a single room, perhaps semi-public, unable to move to do much, for months. Maybe a camera in one or two places in a home? We would ace it, look at how many of us are already stuck. We might even break the world record.

 

[alex3619]

Taking my last thought a bit further, live webcams of real life for ME patients might have an impact.

 

[alex3619]

This is a link to the walk discussion on Facebook:

https://www.facebook.com/permalink.php?story_fbid=792544564136537&id=171411469583186

In this link it does discuss a mobility scooter and not a wheelchair.

 

[Sean]

Taking my last thought a bit further, live wecams of real life for ME patients might have an impact.

An interesting thought. Certainly easier than trying to get out to a march/rally when you are flat out keeping yourself fed and cleaned.

 

[Research 1st]

They will never learn, because harming the ME patient is essential for the ruse that ME = CFS to continue. Thus, the promotion of harmful or useless interventions is a must.

A way to combat this (fantasy of course) would be for a documentary team to select severe ME patients worldwide and produce a documentary that highlights how bad ME (as CFS) can be.

Putting CCTV in ME patients homes for a year, documenting each day, would be a great idea as mentioned.

If recording the lives of the multi decade severely affected it could show a disease that displays on camera the effects of:

Respiratory muscle weakness leading to distress at rest, when infected, post exertion.
Memory dysfunction making independence and work/education impossible.
Barely able to stand up or walk so needing disability aids (cane, stair-lift, wheelchair etc).
Constant colds and also co-infections see in AIDS patients.
Chronic pain.
Balance dysfunction.
Can't sleep.
Reliant on carers to get through a day for basic needs.
Difficulty with swallowing, bowels, eyesight, sensation (touch) etc.
Intolerance to heat, just like an MS patient.
Social breakdown of relationships, family, lack of own children to make new families.
Poverty as we cannot work to earn money to live even a basic existence as equal people.

All of the above, would show how absurd it is for people severely affected by ME (CFS) to be told that GE and CBT will make them better!

What would be shown would be someone who looks like they have a less aggressive form of never ending AIDS. However, all of this would not be politically correct, it would never be allowed to be shown as the lie of biopsychosocial theory would be exposed and mass world wide medical fraud.

To humilate the patient and misrepresent them, is a given. This is what GE, CBT does.
As long as CDC criteria remains in place, the patients remain powerless and no one can be sued.

A cruel reality for those diagnosed with ME and CFS, is CFS is a concept needing nothing to be wrong physically that can be measured and conversely ME is a suggestion based on abnormal measurable signs of a novel disease by Ramsay. Both ME and CFS, will get you ignored in the doctor's office.

By disbelief and disinterest the original ME (CFS) patients can then be hobbled by the nonsense about 'exercise' in the same way as if munching pizza's was said to help 'some people' with hypertensive diabetes. As long as hypertensive diabetes requires no tests, then yes, eating pizza's helps 'some people'.

Ergo, exercise is safe and effective for ME and CFS, because with no evidence necessary, it is. Roll that out as 'evidence based' please secretary, just don't ever include the severely affected in your research or those with actual signs of disease (that people with ME have).

 

[Gingergrrl]

The MEA have a person with 'M.E.' undertaking a 900 mile walk to raise funds for them, starting on severe awareness day.

'When will they ever learn' indeed.

@Min This seems like another sick joke like that article about the woman with "Severe ME"who paddle boarded for ten hours and had two jobs, etc, etc. It's like having a cake eating contest to raise awareness for diabetes. It hurts the patients and the cause. Their PR person needs to be fired.

 

[Research 1st]

Yes the person who 'swam' around an Island in the UK? Don't forget we have the UK Olympic athletes who 'beat ME' because they were depressed and over-trained. (Exercise as the therapy again).

I must add this is never the patients fault, we cannot blame them. It's the absurd diagnostic criteria and the media, the media that loves to write titles like 'CFS is real after all'. 'CFS not all in the mind according to new study'.

The media is owned, run by, and influenced by massive corporations with link to certain people in certain places.

Patients seen to be malingering are their commodity. Without CDC criteria, ME comes out of the shadows. CFS must remain to have legitmacy for delegitimising ME (as CFS). Hence we see these people who believing they had ME (as CFS) who can do the very thing you can't - exercise.

 

[Min]

Yes the person who 'swam' around an Island in the UK? Don't forget we have the UK Olympic athletes who 'beat ME' because they were depressed and over-trained. (Exercise as the therapy again).

I must add this is never the patients fault, we cannot blame them. It's the absurd diagnostic criteria and the media, the media that loves to write titles like 'CFS is real after all'. 'CFS not all in the mind according to new study'.

The media is owned, run by, and influenced by massive corporations with link to certain people in certain places.

Patients seen to be malingering are their commodity. Without CDC criteria, ME comes out of the shadows. CFS must remain to have legitmacy for delegitimising ME (as CFS). Hence we see these people who believing they had ME (as CFS) who can do the very thing you can't - exercise.

There is absolutely no excuse for an M.E. charity to be reinforcing this misconception by taking money from persons with "M.E." undertaking physical exploits that only the very fit and healthy could manage, especially in a week designed by a severe M.E. charity specifically to raise awareness of severe M.E.

(The 25% group is a tiny charity really struggling as it hardly has any money. It is run by severe sufferers themselves. It does seem insensitive of the much larger and wealthier MEA to overshadow their planned severe awareness day in this way)

 

[Sean]

This seems like another sick joke like that article about the woman with "Severe ME"who paddle boarded for ten hours and had two jobs, etc, etc. It's like having a cake eating contest to raise awareness for diabetes. It hurts the patients and the cause. Their PR person needs to be fired.

I'm not very happy about it either. It is almost insulting, and certainly dangerously misleading. Coz, you know, we just don't have enough prejudice and idiocy to put up with.

It's like having a cake eating contest to raise awareness for diabetes.

Good line.

 

[MeSci]

@Min This seems like another sick joke like that article about the woman with "Severe ME"who paddle boarded for ten hours and had two jobs, etc, etc. It's like having a cake eating contest to raise awareness for diabetes. It hurts the patients and the cause. Their PR person needs to be fired.

Just tried 'multiquote' but gave up due to confusion!

As @Sean said the cake/diabetes analogy is a good one, and is also perhaps apt in view of an ignorance-based error that I made years ago.

I heard that my father had developed diabetes, and he was coming to visit. Having seen shelves of biscuits and sweets supposedly for diabetics in Boots the Chemist every time I went in there, I stocked up on these in preparation for my father's visit.

I was looking forward to his appreciation, and was crestfallen to be told that he didn't eat such stuff. I almost wanted to cram this junk food into his mouth and say "ENJOY IT, damn you!"

Now of course I realise how stupid I was.

Although this mistake was the first such mistake that I personally had made, just as Neil's sister probably hadn't recommended GET to anyone with ME before, it is very galling for the other person who has probably heard it many times and is weary of it.

I also know how it feels to be recommended exercise or other harmful/useless 'cures', as I had the Lightning Process suggested to me a few months ago by an assistant in a health shop! This is despite her having a relative with ME, which had been severe for years before more-recent improvement.

EDIT: The reason she suggested it was - a recovery story in the local paper.

I tried to be calm within the limits of my time and energy, but may not have succeeded entirely!

 

[MeSci]

I'm trying to list some useful answers to recommendations of GET (or other useless/harmful 'cures'). I thought that keeping a list of such ideas could save people's energy and stop them getting exasperated due to brain fog preventing them from articulating effective replies.

What to say if people suggest GET:

Say that it makes ME worse.

They may reply "But the paper says it works."

Say that they shouldn't believe everything they read.

They may say "But the article is written by a doctor."

Say that doctors are often wrong, as is the advice they are given by authorities. Ask them if they have ever had a wrong diagnosis or been made worse by treatment, or know anyone to whom this has happened.

They may say that they know someone who has recovered with GET, or have read numerous stories of people recovering with GET.

Ask them how long ago they recovered. Point out that people can recover spontaneously, or that they can become brainwashed into thinking they have recovered, and then have a severe relapse months or even a year or more later, ending up worse than before.

Anything I haven't covered?

 

[MeSci]

Taking my last thought a bit further, live wecams of real life for ME patients might have an impact.

People might claim that the 'patients' were in fact actors. So they would have to use real names, and be prepared for the world to see them in undignified states. It would help if physiological measurements were shown in the videos (e.g. as subtitles) to combat arguments that they weren't making an effort. Something that illustrated impairments in energy production would be especially good.

The psych mob are always trying to find evidence that physiological abnormalities can be due to psychological causes or inactivity, so that's an ongoing battle.

 

[Sleepyblondie]

They will never learn, because harming the ME patient is essential for the ruse that ME = CFS to continue. Thus, the promotion of harmful or useless interventions is a must.

A way to combat this (fantasy of course) would be for a documentary team to select severe ME patients worldwide and produce a documentary that highlights how bad ME (as CFS) can be.

Putting CCTV in ME patients homes for a year, documenting each day, would be a great idea as mentioned.

If recording the lives of the multi decade severely affected it could show a disease that displays on camera the effects of:

Respiratory muscle weakness leading to distress at rest, when infected, post exertion.
Memory dysfunction making independence and work/education impossible.
Barely able to stand up or walk so needing disability aids (cane, stair-lift, wheelchair etc).
Constant colds and also co-infections see in AIDS patients.
Chronic pain.
Balance dysfunction.
Can't sleep.
Reliant on carers to get through a day for basic needs.
Difficulty with swallowing, bowels, eyesight, sensation (touch) etc.
Intolerance to heat, just like an MS patient.
Social breakdown of relationships, family, lack of own children to make new families.
Poverty as we cannot work to earn money to live even a basic existence as equal people.

All of the above, would show how absurd it is for people severely affected by ME (CFS) to be told that GE and CBT will make them better!

What would be shown would be someone who looks like they have a less aggressive form of never ending AIDS. However, all of this would not be politically correct, it would never be allowed to be shown as the lie of biopsychosocial theory would be exposed and mass world wide medical fraud.

To humilate the patient and misrepresent them, is a given. This is what GE, CBT does.
As long as CDC criteria remains in place, the patients remain powerless and no one can be sued.

A cruel reality for those diagnosed with ME and CFS, is CFS is a concept needing nothing to be wrong physically that can be measured and conversely ME is a suggestion based on abnormal measurable signs of a novel disease by Ramsay. Both ME and CFS, will get you ignored in the doctor's office.

By disbelief and disinterest the original ME (CFS) patients can then be hobbled by the nonsense about 'exercise' in the same way as if munching pizza's was said to help 'some people' with hypertensive diabetes. As long as hypertensive diabetes requires no tests, then yes, eating pizza's helps 'some people'.

Ergo, exercise is safe and effective for ME and CFS, because with no evidence necessary, it is. Roll that out as 'evidence based' please secretary, just don't ever include the severely affected in your research or those with actual signs of disease (that people with ME have).

 

[Sleepyblondie]

I hope you will share these suggestions on ME Ass page

 

[Sleepyblondie]

There is absolutely no excuse for an M.E. charity to be reinforcing this misconception by taking money from persons with "M.E." undertaking physical exploits that only the very fit and healthy could manage, especially in a week designed by a severe M.E. charity specifically to raise awareness of severe M.E.

(The 25% group is a tiny charity really struggling as it hardly has any money. It is run by severe sufferers themselves. It does seem insensitive of the much larger and wealthier MEA to overshadow their planned severe awareness day in this way)

 

[Sleepyblondie]

I hope you will share your thoughts on ME Ass page

 

[Sleepyblondie]

Just tried 'multiquote' but gave up due to confusion!

As @Sean said the cake/diabetes analogy is a good one, and is also perhaps apt in view of an ignorance-based error that I made years ago.

I heard that my father had developed diabetes, and he was coming to visit. Having seen shelves of biscuits and sweets supposedly for diabetics in Boots the Chemist every time I went in there, I stocked up on these in preparation for my father's visit.

I was looking forward to his appreciation, and was crestfallen to be told that he didn't eat such stuff. I almost wanted to cram this junk food into his mouth and say "ENJOY IT, damn you!"

Now of course I realise how stupid I was.

Although this mistake was the first such mistake that I personally had made, just as Neil's sister probably hadn't recommended GET to anyone with ME before, it is very galling for the other person who has probably heard it many times and is weary of it.

I also know how it feels to be recommended exercise or other harmful/useless 'cures', as I had the Lightning Process suggested to me a few months ago by an assistant in a health shop! This is despite her having a relative with ME, which had been severe for years before more-recent improvement.

EDIT: The reason she suggested it was - a recovery story in the local paper.

I tried to be calm within the limits of my time and energy, but may not have succeeded entirely!

 

[Sleepyblondie]

Please share this on ME Ass page.

 

[MeSci]

Please share this on ME Ass page.

I'm not a member. I don't want to join any more sites as I already have reams of usernames and passwords.

Please feel free to post my message on there.