Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

[TigerLilea]

what we have is autoimmune. no amount of antivirals or antibiotics or anything we pump into our system is going to make us recover until they address the autoimmune nature. our immune system will remain weak and we will just keep getting infections.

I agree with Sasha that we don't know what CFS/ME is at this point. It might be autoimmune, however, it might be something completely different. I haven't had an infection, cold, flu, etc. for at least 15 years. It doesn't matter how often I am around other people who are really sick - I don't catch it. For the first 10 years of CFS I caught everything that was going around and it would last for weeks to months. I don't know why things changed for me!!

 

[Gingergrrl]

I agree with those who say that we just do not know the cause of ME/CFS yet and many theories could ultimately proven to be true.

My own opinion is that there is a trigger that causes a viral-reactivation(s) which the immune system is too impaired to handle often due to other immune stressors (illnesses, toxicity, vaccines, surgery, etc), low NK cell functioning, and genetic factors that we are born with (I know the MTHFR mutations factor in, but not exactly sure how) which affects the glutathione, etc, etc.

 

[catly]

Thanks for posting the story @Firestormm. You go Jess! I hope to hear about your continued progress!

For those commenting that it seems that we see more of these stories from the UK, there is this one that is particulary hearbreaking from the US. I can only hope and pray that this young women has some improvements and that this is not truely her final days.

And just a general comment regarding our quickness to question if one really has ME/CFS:

There are so many diseases that have different subsets and origin.

For instances, there are all type of cancers believed to have all different causes (genetics, enviornmental etc.).

Most auto-immune disease, include MS, take various forms of relapsing/remitting or differnt types of progressive disease. Some people go through life hardly affected by MS or Lupus, while others die from them at young ages. As a nurse, I've cared for young people with end stage MS and Lupus-those cases were very hearbreaking. But then Ann Rhomney, Mitt Rhomney's wife, has had MS for quite some time and has been in remission for years. I watched her ride one of her wonderful horses in a clinic several years ago. She was obviously doing very well.

I always thought that there was only one muscular dystrophy, a gentic disorder, but in reality there are many different types of muscular dystrophies, that strike different muscle groups at different ages.

There are subsets in Cystic Fibrosis, another gentic disorder, and they have actually recently found a highly effective treatment for one of those subsets affecting about 4% of those with the disease. The hope is that this new treatment will lead to discovery of cures for the rest of those with this terrible disorder.

Even heart failure has various causes, and there are different types/severity of asthma and of course there are different types/severity of diabetes.

So it is entirely plausible for ME/CFS to have multiple causes, severities, periods of remission and relapse... and possibly premature death. Hopefully we'll have answers in the near future!

 

[Gingergrrl]

@catly Well said and I don't think anyone was questioning whether Jessica has ME/CFS (or at least I know I wasn't) and was just questioning if she had been diagnosed for viruses and what treatments she may have received (for her ME/CFS.) And the other blog you cited re: Brooke who is dying of ME makes me cry every time I read it. I first heard about it a few weeks ago and it is so hard to accept and I keep wishing and praying that there is some other solution.

 

[Sea]

If only physiotherapy and hydrotherapy worked for all of us. Unfortunately, I doubt it does much for infections or immune dysfunction.

It's wonderful to hear a story of a patient moving from completely bedbound to walking. Let's hope she continues to improve and lives a long, happy, healthy life! What a lovely, joyous smile she has in that photo!

I am so pleased for Jess and the progress she has made.

I would love if the article gave some reason as to why now physiotherapy and hydrotherapy has been able to get her out of bed. I know she has worked super hard for this, but obviously that is not the only factor. Surely she has had some kind of rehabilitation before? Without giving a reason - even as simple as saying she has received treatment or naturally recovered - it makes it sound like the physio and hydro are what are curing her and the natural tendency of all the critics reading her story would say of course she was just deconditioned from spending so long in bed

 

[SOC]

... the natural tendency of all the critics reading her story would say of course she was just deconditioned from spending so long in bed

And she may have been. Spending that long in bed will cause deconditioning and the physio might have helped that.

As far as I can tell, Jess is far from cured, or even in remission. She's just managed to walk 3 steps after years of being bedbound. This round of physio may have helped her get past one of the secondary results of years of very severe ME, but it probably hasn't done anything for the ME itself. If the physio and hydrotherapy help her rebuild some muscle and cardiac and autonomic function, that's a great step forward for her, but it probably has nothing to do with her ME directly.

 

[Daffodil]

well i am sure its autoimmune. autoimmune means HERV and Lombardi/DeMeirleir did tissue sequencing and thats what they found. nothing else. no one else did sequencing on tissue. they are the only ones not speculating. they know

 

[Sushi]

well i am sure its autoimmune. autoimmune means HERV and Lombardi/DeMeirleir did tissue sequencing and thats what they found. nothing else. no one else did sequencing on tissue. they are the only ones not speculating. they know

I am not sure that is an accurate assessment of their research, but in any case, this thread is about Jess and her triumph at being about to take a few steps.

Sushi

 

[bertiedog]

And she may have been. Spending that long in bed will cause deconditioning and the physio might have helped that.

As far as I can tell, Jess is far from cured, or even in remission. She's just managed to walk 3 steps after years of being bedbound. This round of physio may have helped her get past one of the secondary results of years of very severe ME, but it probably hasn't done anything for the ME itself. If the physio and hydrotherapy help her rebuild some muscle and cardiac and autonomic function, that's a great step forward for her, but it probably has nothing to do with her ME directly.

And if it turns out she has got Lyme's disease then unfortunately she isn't going to get any better. If she relies on NHS testing she will never know.

Pa,

 

[MeSci]

But that severity is my definition of living hell, and I wouldn't wish it on the worst scum on this Earth

Really? Not even the psych scum? I would. Then they would have to change their tune, as well as suffering some inadequately-severe punishment for all the suffering they have caused.

 

[MeSci]

Actually I disagree. I just think we are more engaged. Trying to gain the attention of the c.1,000,000 Americans supposedly affected seems to me to have been impossible. And I do not understand why.

I disagree with your disagreement.

I was using a UK-based ME forum - admittedly on the Action for ME website but that fact doesn't necessarily mean that all users agree with everything AfME says and does - and left it because I was the ONLY one with any knowledge of - and apparently much understanding of or interest in - medical science. Many people were meekly following the UK's scandalous 'rehabilitation' programmes, with predictable and depressing consequences. I became very frustrated and disillusioned with the site (although I made a lovely friend through it) and left to come here. I found it so refreshing.

I know PR is frequented by people from all over the world, but it is still pretty US-based, and what really appeals to me is the 'can do' attitude, the knowledge and expertise, the quest for more knowledge, the determination, and indeed the powerful campaigning - look at the push to change the US diagnostic criteria, for example.

A lot of the UK stuff seems to be just empty talk, I'm afraid - people saying to each other "Isn't it terrible?"..."Yes, it is" and that's how it ends. Not enough of "Let's do something about it" or concerted efforts to actually do something. I'm not saying that there isn't any, but there's not enough. I gave up trying to get anything done on the AfME site - it got me nowhere.

Sorry - I know this is O-T but felt that it needed saying.

 

[MeSci]

"Clearing intracellulair infections without attacking self is an illusion."

what do you mean by this?

I think he means that if an infection is in your own cells, you can't attack/kill it without attacking/killing your own cells.

 

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

I read the sad blog from the american girl. Its identical to what i went through during the first two years. Identical. I went down to 5 and a half stone. We presumed like she that i was just going to eventually die but it didn't happen. Its not over till its over. I know we can improve from that state. I'd love to hear that she does too.

 

[Firestormm]

@MeSci We were I believe talking about raising awareness through media i.e. patient stories and their relative volume in UK press as opposed to elsewhere. Not necessarily stories you or I might like: but stories none-the-less.

 

[Valentijn]

She's wearing a harness, holding onto a walker, and two people have their hands on her back and shoulders to keep her from toppling over. In the larger image she looks both ecstatic and about to collapse from exhaustion.

Winching someone out of bed and propping them up for a few seconds seems like a rather poor indication of progress. Of course, I certainly hope that physical improvement is possible, but I see no reliable indication of it in the current situation.

 

[SilverbladeTE]

Really? Not even the psych scum? I would. Then they would have to change their tune, as well as suffering some inadequately-severe punishment for all the suffering they have caused.

If it could be done for a year so they could learn, maybe, but nobody ever deserves to be tortured mercilessly for the rest of their life, that is utterly inhumane and horrible

 

[lansbergen]

I think he means that if an infection is in your own cells, you can't attack/kill it without attacking/killing your own cells.

Attack and in many cases but not always kill them.

I want them killed and the rubbish cleaned up.

 

[Daffodil]

my doctor says I have "intracellular infection" and I believe he is using antibiotics for it

 

[MeSci]

@MeSci We were I believe talking about raising awareness through media i.e. patient stories and their relative volume in UK press as opposed to elsewhere. Not necessarily stories you or I might like: but stories none-the-less.

We can't be sure that the amount of media coverage varies according to how many stories are submitted. It is quite likely to vary more according to what the priorities of the media are in different countries. I'm sure media outlets are inundated with stories from people who want to raise awareness of a particular issue, but the media outlets will decide what gets published.

For example, someone here (on PR) has been trying for some time to raise awareness of the problems relating to disability services in her country, and I put a huge amount of effort into trying to get a carefully-researched, referenced article published in the UK about the hazards of artificial perfumes. I approached every media outlet I could think of.

So far our attempts have failed.

 

[Min]

A lot of the UK stuff seems to be just empty talk, I'm afraid - people saying to each other "Isn't it terrible?"..."Yes, it is" and that's how it ends. Not enough of "Let's do something about it" or concerted efforts to actually do something. I'm not saying that there isn't any, but there's not enough.

Patients themselves are making a concerted effort to raise funds for Invest in ME'S biomedical research. We have nearly reached the first target for the Rituximab trial.

Until there is effective treatment, severe myalgic encephalomyelitis sufferers such as Jessica will continue to waste years of their lives ( sometimes their entire lives) lying in darkened rooms whilst the fatigue clinics 'treat' and the psychiatric profession 'research' only those with mild defined fatigue.