Could we do something for Theda?

[Boule de feu]

What will it take before we open our eyes - widely! - to see how some of us are suffering. I was horrified to read about Theda's condition despite the numerous attempts WA Today has made to get her out of her misery.

What could we do as a group to help her (and her wonderful mother who is caring for her around the clock)?

Just have a look at her story and timeline. Unbelievable!

http://www.watoday.com.au/wa-news/theda-suicidal-as-inhome-treatment-refused-20100903-14to1.html

 

[ukxmrv]

I don't need to open my eyes widely to see how people are suffering. Many ME patients I know are as badly affected as Theda and live lives of despair. Many don't have a mother or any family member to look after them.

Don't find it surprising or unbelievable at all. Lost friends with ME due to suicide and sudden deaths.

Terrible. When campaigning these are the people I think of.

 

[Nina]

I would strongly suggest to change the title of this thread.

The last I knew Theda was sometimes able to be online and I imagine she would be horrified to read this (I know I would!).

Please would someone change the name of this thread to something more considerate.

That being said, I am worried about Theda and everybody else in this horrible situation, too, especially about patients who have been forcefully removed from their homes and are subject to medical abuse in psychiatric wards.

 

[Boule de feu]

I also lost a very dear friend who chose euthanasia as an exit.
She was going to lose her sight and had episodes of dementia.
It's very sad to see all the suffering she had to go through before coming to terms with her decision.
CFS does take lives. I wish we could do something for Theda and all of the others who are struggling every day.

 

[Boule de feu]

I would strongly suggest to change the title of this thread.

The last I knew Theda was sometimes able to be online and I imagine she would be horrified to read this (I know I would!).

Please would someone change the name of this thread to something more considerate.

That being said, I am worried about Theda and everybody else in this horrible situation, too, especially about patients who have been forcefully removed from their homes and are subject to medical abuse in psychiatric wards.

I understand how it could be offensive and I have requested to change the title or we could delete this thread altogether. It does not matter to me. I just felt very compelled by her story and I wanted to do something. As a group I thought we could get somewhere.

 

[ukxmrv]

I applaud your intention BDF,

There needs to be some way that the mildly affected can fight for and help the severely affected like Theda.
Many thousands of patients are in the same position as she is.

 

[Nina]

I understand how it could be offensive and I have requested to change the title or we could delete this thread altogether. It does not matter to me. I just felt very compelled by her story and I wanted to do something. As a group I thought we could get somewhere.

I don't think the thread needs to be deleted as the intention is certainly good, it just needs a different name, like "how to help severely ill patients" or something. Thanks.

 

[Desdinova]

"An email from Dr Hames' office sent to Ms Adams last week said they had consulted a Fremantle Hospital doctor, who is treating Theda for a different aspect of her illness. That doctor said IV fluids wasn't the standard treatment for her condition, although he admitted it was outside his field of expertise."

I think I can figure out what kind of Doctor he/she is and what that aspect is. I'm becoming more and more convinced that the only way the public will become convinced this is real is if this disorder becomes epidemic with at least one person in every household afflicted.

 

[justinreilly]

This article is from last year. Here is the most recent article from July. Some good news. Hope she continued to recover.

http://www.watoday.com.au/wa-news/a-light-at-the-end-of-the-tunnel-for-theda-20110703-1gx21.html

More articles from most to least recent:
http://www.watoday.com.au/execute_s...order=DESCENDING&ss=watoday.com.au&view=media

 

[richvank]

Hi, all.

There is good news about Theda on the Help Theda Facebook page and on the Theda Myint Facebook page. She had had an Igenex panel for Lyme disease run in 2009, and it was judged to be negative. In early September, 2011, it was reported on Facebook that an experienced Lyme doctor reviewed the results of the panel and diagnosed her with Lyme disease. Antibiotic treatment was begun, and she has been improving! Hooray!

Theda has also reported that Dr. de Meirleir's treatment has helped her intestinal problems, so that she is now able to eat better. Another Hooray!

Rich

P.S. I think this has to make us wonder again about how many more people with ME/CFS diagnoses actually have Lyme disease. It has been so difficult to detect. One happy note is that Dr. Burrascano has been reporting lately on a new culture test for Borrelia that looks good. Maybe this will remove some uncertainty. I certainly hope so!

 

[Enid]

Such good news - and as testing becomes more accurate now. Hopefully aid for many too at last.

 

[Graham]

We would all like there to be some magic solution to this, but there isn't. So why don't we do what we can do? Those of us who are moderately or mildly affected can at least keep in touch with someone who is very badly affected. One thing that they feel is isolation, and that is something we can help with. A short note, on nice paper or illustrated notelet, sent regularly and reliably over a long period of time can help. Why that and not an email? Emails are hard to read, whereas notelets can be dotted around the room just to look at, even if the recipient hasn't the energy to read them themselves. They can be read in short patches. And don't forget birthday cards and christmas cards etc.

OK, I know it is a small thing, but it does work. It takes a bit of getting used to the fact that you don't get replies (or very very few), and it takes a bit of effort to get the overall tone right. (Mind you, there's no point in starting if you are likely to give up after a while.)

 

[Boule de feu]

Hi, all.

There is good news about Theda on the Help Theda Facebook page and on the Theda Myint Facebook page. She had had an Igenex panel for Lyme disease run in 2009, and it was judged to be negative. In early September, 2011, it was reported on Facebook that an experienced Lyme doctor reviewed the results of the panel and diagnosed her with Lyme disease. Antibiotic treatment was begun, and she has been improving! Hooray!

Theda has also reported that Dr. de Meirleir's treatment has helped her intestinal problems, so that she is now able to eat better. Another Hooray!

Rich

P.S. I think this has to make us wonder again about how many more people with ME/CFS diagnoses actually have Lyme disease. It has been so difficult to detect. One happy note is that Dr. Burrascano has been reporting lately on a new culture test for Borrelia that looks good. Maybe this will remove some uncertainty. I certainly hope so!

I am happy to see that she is doing better. As long as she stays positive...
Thank you for the news, Rich.

 

[Boule de feu]

We would all like there to be some magic solution to this, but there isn't. So why don't we do what we can do? Those of us who are moderately or mildly affected can at least keep in touch with someone who is very badly affected. One thing that they feel is isolation, and that is something we can help with. A short note, on nice paper or illustrated notelet, sent regularly and reliably over a long period of time can help. Why that and not an email? Emails are hard to read, whereas notelets can be dotted around the room just to look at, even if the recipient hasn't the energy to read them themselves. They can be read in short patches. And don't forget birthday cards and christmas cards etc.

OK, I know it is a small thing, but it does work. It takes a bit of getting used to the fact that you don't get replies (or very very few), and it takes a bit of effort to get the overall tone right. (Mind you, there's no point in starting if you are likely to give up after a while.)

Besides me, I don't know anyone who is as sick (or worse) than I am but I would love to do something like that for someone who needs it. It's a great suggestion.

 

[Graham]

Thanks Boule: I did suggest it to AfME, but the person who was interested left, and no-one took it up.

It would need to have an "official" organization. The "25% group" could be approached to see if anyone there would like a pen-friend, on the understanding that is would be expected to be rather one-way for much of the time. Then the "official" organization would need to build up a team of volunteers, possibly working in pairs (I'd hate to see a bed-ridden patient be taken up by someone, then let down - they have enough to put up with without feeling a sense of rejection), and would try to match interests (age doesn't seem to be too much of a factor in this). Finally, the volunteers would probably need a confidential forum between themselves, so that they can encourage each other and make suggestions of what to write, what approach to take etc. - because it is quite difficult at first.

Well, that's my thoughts about it anyway.

Is it worth it? Is it rewarding? Very much so! Is it appreciated? You have no idea how much it matters to someone who feels an outcast from society. It isn't unlike the letters that Amnesty International sends out - different situation, but similar isolation.

Am I going over the top here? Probably!

 

[ukxmrv]

One of the UK charities tried to set up a "buddy" system years ago modelled on the HIV/AIDS one. They asked for volunteers who would be able to visit and help out ME patients. Sadly, it didn't get off the ground as there were few volunteers.

I know of patients with ME living in appalling situations and now in the UK face a huge struggle just to keep the benefits they have. Adults living alone who have no one to come in and care for them if they are unable to get out of bed.

 

[Graham]

Thanks ukxmrv, I didn't know that, but a good friend on another (very small) forum mentioned the HIV/Aids buddy system to me when we were discussing it. Visiting and helping out though is probably more than many people with ME could manage on a regular basis, and I can see why they would be wary of offering help that they may not be able to deliver. That's why I think that focusing on what we really could manage, just keeping in touch as a pen-pal, could work.

The support system in the UK is terrifying, and the new rent rules for people under 35 are seriously scary. For those of you outside the UK, people under 35 who rely on benefits are going to have their rent support reduced to the extent that they would have to go for a flat share or equivalent - a tough option for people with ME, negotiating shared kitchen, bathroom etc. with probably healthy and lively flatmates under 35.

 

[Boule de feu]

Thanks ukxmrv, I didn't know that, but a good friend on another (very small) forum mentioned the HIV/Aids buddy system to me when we were discussing it. Visiting and helping out though is probably more than many people with ME could manage on a regular basis, and I can see why they would be wary of offering help that they may not be able to deliver. That's why I think that focusing on what we really could manage, just keeping in touch as a pen-pal, could work.

The support system in the UK is terrifying, and the new rent rules for people under 35 are seriously scary. For those of you outside the UK, people under 35 who rely on benefits are going to have their rent support reduced to the extent that they would have to go for a flat share or equivalent - a tough option for people with ME, negotiating shared kitchen, bathroom etc. with probably healthy and lively flatmates under 35.

I can see why such a buddy system would be difficult to start and to maintain. As far as visiting goes, I can't get out of the house. I could receive phone calls, though. As long as there are not too many. I feel pretty hopeless. I would like to do so many things, but there is always a "but"... I have considered joining a CFS organization, but can't participate much. Bummer!

 

[ukxmrv]

I wonder if a penpal system is what severely affected patients need set up and what they would want? From memory I think that the 25% in the UK does have one and it is used so different patients will have different needs. Depends on how isolated they are and how much family/friends support there still is for them.

When I was at my most severely affected and before the internet I was more interested in things like newsletters from different ME groups around the world, reports on treatment and conferences. Things like that on tape would have been wonderful so I could lie and listen to them when I was unable to read.

Also the practical things would have taken presedence for me. Yes, most ME patients are too sick to leave their homes and care for someone else but it's still an enormous pity that we cannot get well volunteers to act as buddies and visit people in their homes. I know of so many patients who don't get any care from their local council and live in this lonely, quiet desperation with no meaningful NHS care.

This is a project for someone. The 25% group would know what is needed most of all. It may be that a penpal scheme is the most practical thing and the only thing we can offer them.