Prognosis according to CFS/ME working group (UK)

[justy]

This looks interesting - on Dr Bells work on 'recovery' rates and what recovery means.



https://www.masscfids.org/more-reso...ndrome-rising-incapacity?showall=1&limitstart=

@charles shepherd - I suppose initially this discussion began after a comment that was taken from the working group recommendations, so I focused on that, but really it is a general discussion about the issues that arise when Drs, patients, health providers try and discuss prognosis V the experience of patients on these boards.

I linked to the specific page above and listed P. 7 for people to read. I have read some more of the report and my comments were not a general criticism of the report.

 

[Forbin]

Didn't Lenny Jason publish research a while back (last decade) that suggested the average life span of pwME is roughly 15 years fewer than average? How would this marry with most enjoying sustained improvement?

Jason's study was of the deaths of 166 CFS patients who were on a National CFIDS Foundation memorial list. This group of CFS patients had earlier than expected deaths from heart disease, cancer and suicide.

I doubt such a list included many (if any) patients who had "recovered," so the early deaths from heart disease, cancer and suicide - which are, without question, compelling markers of the seriousness of the disease - really say nothing about the possibility of recovery.

The authors of the paper themselves say:

It also was unclear how representative the memorial list is and from what population it draws its data. Clearly, it is not possible to generalize the data from this memorial list to the overall population of patients with CFS.

http://www.ncf-net.org/library/CausesOfDeath.pdf

 

[rosie26]

I think my ME is progressive, it's pretty plain in that I started out gradually progressing from mild to severe and I am now having problems with my lungs. I need to get my heart checked out as well by a specialist. I think my heart and lungs might take me out early. I think I am being realistic here and not overstating things. If I do go early it will be recorded that I died of lung or heart condition. In my mind I would have died from the complications of ME.

 

[K22]

It seems to me there are a couple of issues at play here.

Do a majority of ME/CFS patients experience sustained improvement? I'm not sure anyone has definitively answered this yet. If we don't know that, we should not claim it. Also, are we talking 99% majority, or 51% - the devil is in the details, and democracy is not an asset in medicine.

When being diagnosed with ME/CFS, one may want to paint as positive an outlook as possible. Still, there is an obligation to the patient to be accurate that is every bit as cogent. "Many" may be more appropriate than "most".

Also, research funding may be impacted by the belief that "most" will improve. That qualifier dilutes the dread, I think, and the sense of urgency or need. Perception rules, I fear, and this is seldom so demonstrable as in the arena of contested diseases. That understandable inclination to assuage patient fears may carry a heavy price.

I totally agree and also feel the "most" comment is weakly supported if the figure might be just over 50% & would prefer many. I'd assumed it was from stats of around 75%. If 52% of population voted conservative in the last election (they didn't) I wouldn't say that the British government has the support of most of the British public. Also in the UK early 2000 how many of the papers used to support these figures would have been using Oxford & at best Fukuda criteria which have been shown to be less generally ill than those with ME.

I think that the deterioration is also quite common not rare, not just due to the disease itself but once you become below a certain level of function it's very hard to avoid the unavoidable exertions and stresses of life which crop up and knock you back. UK pacing manuals often say things such as if you can walk 40 minutes once /day it's best to split it in to 2 20 minutes. Life at that level might be easier to pace, as long as you have a good support system and no unpredictable dependants. However being a house bound single mum to a young child for eg is much tougher. Or once you are severe, if you develop another health condition which means unavoidable but tiring hospital visits then it will take a toll.

I think that the cfids prognosis page is better. I think the CMO 1 very British.

 

[ithought]

Over 30 years I have reloaded and remitted but my general protraction has been a steady decline... I think a lot of the problem with any discussion is that there is probably more than one disease or group of people with me.. Fast diagnosis and quick acceptance of new life style may enable some stability, but how do we know they won't relaps 5 years later.. At what point is 'recovery' really recovery?

 

[lansbergen]

I think my ME is progressive, it's pretty plain in that I started out gradually progressing from mild to severe and I am now having problems with my lungs. I need to get my heart checked out as well by a specialist. I think my heart and lungs might take me out early. I think I am being realistic here and not overstating things. If I do go early it will be recorded that I died of lung or heart condition. In my mind I would have died from the complications of ME.

Yes. I was at that state too.

My heart seemed to stop several times and I could hardly breath.

There was one symptom I could not explain with what I knew but now I am pretty sure it is dry pleuritis.
It is much better now but that took a very long time.

The heart I think was from pericarditis and that has not happened in a very long time.

I am pretty sure both pericard and pleura were to dry like other membranes like the mucosa.

Typical for me was that at the end of a flare the glands suddenly started working again and overproduced.

 

[MeSci]

I think my ME is progressive, it's pretty plain in that I started out gradually progressing from mild to severe and I am now having problems with my lungs. I need to get my heart checked out as well by a specialist. I think my heart and lungs might take me out early. I think I am being realistic here and not overstating things. If I do go early it will be recorded that I died of lung or heart condition. In my mind I would have died from the complications of ME.

Have you been tested for Coxsackie B, Rosie? I was reading up on that yesterday after reading something here, and was struck by how similar the symptoms are to those of many of us here, and it is proposed as one possible cause of ME. This page gives some info about the Coxsackie viruses.

EDIT - the reason I suggested it to you is that it can affect the heart and lungs.

 

[rosie26]

Yes. I was at that state too.

My heart seemed to stop several times and I could hardly breath.

There was one symptom I could not explain with what I knew but now I am pretty sure it is dry pleuritis.
It is much better now but that took a very long time.

The heart I think was from pericarditis and that has not happened in a very long time.

I am pretty sure both pericard and pleura were to dry like other membranes like the mucosa.

Typical for me was that at the end of a flare the glands suddenly started working again and overproduced.

Thanks @lansbergen for your thoughts. I will say more on my menopause thread very soon. Yes, your right about the dryness in the lungs. I haven't got a cough, it feels more on the dry side of things down there.

I think all the burning heat is keeping them dry - good antiseptic but not comfortable and it is worrying at times. I am not sure about pleurisy. I had some scary pain from the hyperinflation. Glad you pulled through. Hope I'm the same.

Edit: I have just looked up pleurisy symptoms and it does sound a lot like many of the symptoms I had. Thanks for pointing that out to me.

 

[rosie26]

Have you been tested for Coxsackie B, Rosie? I was reading up on that yesterday after reading something here, and was struck by how similar the symptoms are to those of many of us here, and it is proposed as one possible cause of ME. This page gives some info about the Coxsackie viruses.

EDIT - the reason I suggested it to you is that it can affect the heart and lungs.

I have had throat swabs done in the past. I will check with my doctor to see if I have been tested for it when I see him next. Thanks MeSci.

 

[alex3619]

Yes, I expect most of us do improve management of the illness over time

I think a large chunk of improvement probably comes from this. We manage it better, we are not actually improving.

 

[justy]

I think my ME is progressive, it's pretty plain in that I started out gradually progressing from mild to severe and I am now having problems with my lungs. I need to get my heart checked out as well by a specialist. I think my heart and lungs might take me out early. I think I am being realistic here and not overstating things. If I do go early it will be recorded that I died of lung or heart condition. In my mind I would have died from the complications of ME.

I can't 'like' this post Rosie, but wanted to let you know that I have read what you have to say and I understand. I am beginning to have more and more complications as time goes on - I now have recognised Mitral valve prolapse with regurgitation, MCAS, and early arthritis.

I'm not sure how anyone as ill as many round here could be expected to have a completely normal life expectancy - yet as you say , any early deaths wont be recognised as leading on from ME, but listed as separate. At 46 I only have a limited amount of life left before the normal ageing process makes everything harder as well - I cant keep 'fit and healthy' when unable to do ANY exercise at all for 7 years, including just walking.

When discussin prognosis, no one mentions limited life span, but I think it is a real possibility.

 

[justy]

I think that the deterioration is also quite common not rare, not just due to the disease itself but once you become below a certain level of function it's very hard to avoid the unavoidable exertions and stresses of life which crop up and knock you back. UK pacing manuals often say things such as if you can walk 40 minutes once /day it's best to split it in to 2 20 minutes. Life at that level might be easier to pace, as long as you have a good support system and no unpredictable dependants. However being a house bound single mum to a young child for eg is much tougher. Or once you are severe, if you develop another health condition which means unavoidable but tiring hospital visits then it will take a toll.

I think that the cfids prognosis page is better. I think the CMO 1 very British.

Yes I agree - deterioration seems common among people around here and people I have met. Of course as you also pointed out criteria for dx is important too. If you are assessing people as having M.E who have had low mood and 6 months of fatigue that is not capturing people with a true neuro-immune illness that may incorporate chronic viral and bacterial infections etc. Those type of people may have a much better prognosis - ass they possibly don't have M.E.

And I agree that pacing is very hard if you are already at a fairly low level of functioning (housebound etc) and have dependants - this makes it very hard to stabilise. But 'stabilisng' is not recovery or even an 'improvement' - it can be seen as an improvement but is just not getting worse. All the pwme then needs is to catch a viral infections for instance to beome even more ill and lose the stability they had worked so hard for.

Ha - walking 40 minutes a day, what a dream! I haven't been able to walk more then about 15 minutes once a week for years without exacerbating my condition - hence I use a wheelchair. Sometimes I think the people who devise pacing manuals etc have no idea how severe the illness can actually be.

Do you have a link to the prognosis page on the CFIDS site? I have looked but cant find it - their site is ironically not easy to navigate with neuro issues.

 

[TiredSam]

Do you have a link to the prognosis page on the CFIDS site?

http://www.cfidsselfhelp.org/library/about-chronic-fatigue-syndrome#prognosis

 

[justy]

from the CFIDS page (thanks Tired Sam)

In addition to a range of outcomes, the course of CFS also varies. Some people with CFS make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.

No mention though of anyone progressively, steadily or aggressively declining - this does happen!

 

[mermaid]

I have been ill for over 10 years, but as I started out with hypothyroidism (20 years) and am now 63 I am beginning to find it hard to know what is age decline and what is ME/CFS. That said I know my stamina went down the tube some 6 years ago when I relapsed with whooping cough, and have never quite got back to the point I was at before that when I had mild ME/CFS.

I do agree with what has been said here about managing things better feels like improvement but probably isn't in measurable terms. I have worked away on managing the symptoms a lot over 6 years, and some things have waxed and waned with no clear reasons why and a very few have improved with good management.

I have had some noticeable physical improvement in the past couple of years with my immune system issues and that has come about by using herbal medicine and taking a regular mix from a medical herbalist, topped up with Oil of Oregano from myself. That has meant I can extend my activity more with less relapse, which makes me feel better mentally.

 

[MeSci]

from the CFIDS page (thanks Tired Sam)



No mention though of anyone progressively, steadily or aggressively declining - this does happen!

They do say

some patients worsen over time

and

10% to 20% worsened over time

 

[waiting]

Didn't Lenny Jason publish research a while back (last decade) that suggested the average life span of pwME is roughly 15 years fewer than average? How would this marry with most enjoying sustained improvement?

It would not.

An excerpt from Dr. Jason's 2006 paper:

"When examining ages of death, we found that those dying of suicide were significantly younger than those dying of heart failure. Another intriguing finding was the overall ages of death for those dying of cancer, suicide, and heart failure. If one examines national rates of death for these conditions, the ages of death for these three conditions among the patients with CFS are considerable earlier. The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population, which means that CFS might have increased the risk of death for at least this sample."

Ref:

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes of Death - CFS Patients.pdf


So, from this limited sample, with the methodological problems Dr Jason notes in the study:

Cancer --24.2 years earlier (median)
Suicide --8.7 years earlier (median)
Heart failure --24.4 years earlier (median)

[caveat: Statistically, is it correct to simply subtract the average ages?]

 

[RYO]

If there is little hope for a treatment to improve the quality of my life, what is the point of living longer.

 

[waiting]

If there is little hope for a treatment to improve the quality of my life, what is the point of living longer.

Quality of life for many of us is indeed very low; however, there is still hope -- Rituximab and cyclophosphamide (I think that's the other drug the Norwegian oncologists are trying). Also the Lipkin studies, the Davis big data studies, etc.