MS research versus ME/CFS research

People are generally not interested in supporting research into a medical condition until they have experienced it, or see (and believe) how it affects a close family member or friend.

Many people with MS and Parkinsons whose onset starts in their 20's are still able to get a 20-30 year career, even as a high earning professional (I know people with both these conditions who have done so). Their illness doesn't often bring an immediate 50% reduction in their functioning if it is diagnosed early (except the more aggressive forms).

Getting ME in your teens or 20's pretty much robs you of a career and of the opportunity to become stable financially in adulthood (unless you are one of the lucky ones who fully recover). I'm speaking from experience here.

Additionally, many PWME get absolutely no sympathy or help, even with daily living, from their family members, much less any interest in raising funds for their charities or research (due to how ME presents and to the public narrative that surrounds it). It's not uncommon to be left by your partner, even if you have kids that need supporting. Again, speaking from experience here too.

 

People with MS and Parkinsons are referred to specialists and have their symptoms and disease progression continually monitored by various healthcare professionals. They get lots of specialist nursing support and advice too. PWME are abandoned by their doctors, even in primary care, left to rot in their homes and beds, refused home visits when bedridden etc. What message does this send to the public about the nature of ME? Not one of a grave illness that needs urgent research!

 

A couple of depressing charts

 

It's interesting to see that attention deficit gets so much funding. I've never seen anyone privately fundraising for research into it, but I do know that it seems to fascinate researchers and psychiatrists!

Edit: And a high proportion of those who suffer from it do not want to be medicated!

 

There would be so much more funding if people were scared shitless to get this

At the moment most people haven't even heard of ME, and those who have often think its curable by some tin pot hat treatment

The fact is ME almost completely strips you of all humanity, as you are unable to do anything for prolonged periods of time without getting increased profound malaise, brainfog etc. All your dreams, work/studies, social life becomes impossible to keep from slowly slipping from ur grip. At some point many patients cant even remember what its like to feel healthy, and they're even disabled in their dreams.

And then for years u just keep waking up to this zombie-like groundhog day no matter what u do, and no matter what u try.

It is physically and mentally putting everyone on the very edge of whats possible for a human (especially in the severe and very severe category)

Now we all have our coping mechanisms, and I apologize for the gloomy post; but these are the stone cold facts and everyone should be absolutely terrified of acquiring ME

 

I often wonder why people don't dread ME. I suspect it is just too scary so it is easier to think people are exaggerating. A disease which can appear out of the blue and turn your healthy active child into a bed ridden tube fed invalid is just too much to contemplate. That you will then be accused of child abuse and threatened with your child being removed - well it must be bad parent's that happens to.

The epidemics came just as polio was finally tamed and ME traditionally affected medical staff, it was thought because of the heavy burden of infection the face, so much better to believe it was only doctors who couldn't quite cope that became ill.

When CFS came along people were frightened of AIDS but you needed bad habits to get that so you were safe. Much easier to believe that CFS was just feeling a bit tired and not something that devastated lives.

 

Is the research funding worldwide graph per patient?

I'd be interested in knowing the following for ME vs MS for a poster or maybe a video. Particularly for the UK.

Number of Specialists
Number of drugs
Number of clinical trials in progress atm
Number of years investment in research
Quality and Amount of medical training e.g. Number of days

 

I think there are quite a lot of people at a mild level with ME. For example, people who were a bit worse but then improved. They often seem to move on from the ME world and don’t tend to contribute much financially. So this is different as you say to Multiple Sclerosis where people can be concerned in the future they will deteriorate. Though I think some of the more mildly affected with ME may go on to have bad periods in the future. If we ever get to the stage where there are better and cheaper tests for ME/CFS, I think more people will face up to having it more and might be more inclined to fundraise and donate.

With regard to siblings of people with ME, most will not have their income affected by having a sibling with the condition. Parents are a mixed group, with some having their income affected but many do not, particularly if the person got ill as an adult. We did a drive for standing orders for our research fund around 15 years ago and quite a number of siblings and parents signed up. Many are still contributing to this day. Siblings and parents often gave and give larger amounts than people with the illness.

In many if not most of the cases where siblings or parents signed up for a monthly, the person with the illness also signed up. This and other things have suggested to me that if you can get people with the illness interested in raising money privately, they can untap sources of money, either in terms of donations and/or fundraising events. As someone said in this thread, it tends to be people with illnesses and their family and friends who raise money for particular conditions.

I have never asked my siblings for money for myself in the 25 years I have been severely affected but I have asked them to consider donating or fundraising for the cause (which they have done). I think many other people might be similarly reluctant to ask for funds for themselves.

 

The language of the psychosomatic model is clearly one that describes helpless idiots, fooled by confusion over mere bodily senses and a phobia of exercise, or whatever. Most people don't see themselves in it, think they are not weak and so it could not happen to them.

I initially entirely dismissed the possibility of the diagnosis when my GP suggested it since it did not fit my experience at all. I had experienced mild chronic fatigue most of my life and this was nothing like it.

Plus the most common description I see from physicians is that ME is the physical manifestations of depression, so in the end it's still depression and that can be fixed with antidepressants (nevermind the low effectiveness rate) and exercise so it's not a big worry beyond the occasional need to detain in a psych ward for the patient's own safety.

People were initially afraid of the flu-like illness happening in epidemics. With good reason. Chronic fatigue took care of that, worry gone. Ironically, even "yuppy flu" was a less pejorative and more accurate name than CFS.

 

I've never understood the link with depression. They ignored all the symptoms which made ME different then said what was left was the same as depression yet even that does not work. Depression is a terrible disease because nothing seems worthwhile but people with ME are enthusiastic to do as much as they can to the point of making themselves sicker.

 

MECFS research should be able to leverage the huge funding for MS, especially, for symptom treatments. MS and MECFS both have fatigue and cognitive dysfunction as major symptoms. If a treatment works for these symptoms in MS, then likely it will work for these same symptoms in MECFS.

 

Mmm?

https://www.ncbi.nlm.nih.gov/pubmed/29609859

J Clin Neurosci. 2018 Jun;52:1-4. doi: 10.1016/j.jocn.2018.03.024. Epub 2018 Mar 30.
Cognitive behavioral therapies and multiple sclerosis fatigue: A review of literature.
Chalah MA1, Ayache SS2.
Author information

1 EA 4391, Excitabilité Nerveuse et Thérapeutique, Université Paris-Est-Créteil, France; Service de Physiologie - Explorations Fonctionnelles, Hôpital Henri Mondor, Assistance Publique - Hôpitaux de Paris, France.

2 EA 4391, Excitabilité Nerveuse et Thérapeutique, Université Paris-Est-Créteil, France; Service de Physiologie - Explorations Fonctionnelles, Hôpital Henri Mondor, Assistance Publique - Hôpitaux de Paris, France; Lebanese American University Medical Center, Rizk hospital (LAUMC-RH), Beirut, Lebanon. Electronic address: samarayache@gmail.com.


Abstract
BACKGROUND:
Patients with multiple sclerosis (MS) commonly suffer from fatigue, a multidimensional symptom with physical, cognitive and psychosocial components that can drastically alter the quality of life. Despite its debilitating nature, the current treatment options are limited by their modest efficacy and numerous side effects. Cognitive behavioral therapies (CBT) have been applied in MS patients and might be of help in relieving fatigue. This constitutes the main objective of the current review.

METHODS:
Computerized databases (Medline/PubMed, Scopus) were consulted till January 2018, and a research was conducted according to PRISMA guidelines in order to identify original research articles published at any time in English and French languages on cognitive behavioral therapies and MS fatigue as a primary outcome. The following key terms were used: ('multiple sclerosis' OR 'MS') AND ('fatigue') AND ('cognitive behavioral therapy' OR 'CBT' OR 'cognitive therapy' OR 'CT' OR 'behavioral therapy' OR 'BT' OR 'psychotherapy').

RESULTS:
Fourteen papers matched the above criteria (11 trials, 2 methods and 1 study addressing CBT mechanisms of action). CBT seems to have positive effects on MS fatigue. However, the onset and duration of effects varied across the studies.

CONCLUSION:
These data highlight the promising effects of CBT in MS fatigue. Admitting the limited number of studies, more protocols are needed before drawing any conclusion. Future works might benefit from combining CBT with emerging therapies such as non-invasive brain stimulation techniques which also yielded promising results in the setting of MS. This may help in long-term maintenance of fatigue relief.

Copyright © 2018 Elsevier Ltd. All rights reserved.

KEYWORDS:
Behavioral therapy; CBT; Cognitive behavioral therapies; Cognitive therapy; Fatigue; Multiple sclerosis

 

Then we are definitely, absolutely not talking about the same thing.

How is it so hard to have a common vocabulary in such a high stakes profession? Arbitrarily giving random definitions to common words is not a good strategy to solve problems. Fracking heck.

 

The fatigue in MS is very different from the PEM that is experienced in ME, but it is like that experienced in a lot of diseases, mainly due to the struggle to do things with a body that doesn't work though there is a neurological, as they call it, aspect as well.

It would be surprising if there was not fatigue like that in ME but we have to stop because of the crash before it gets to that stage.

Cognitive dysfunction may be similar but they do not experience it to the extent we do, at least in anyone I know. When I could do it myself, I would have episodes where I couldn't get dressed because I couldn't think how to do it or be forced to play a game with the kids on how to get home from the shops because I could not remember the way.

Our problem is that what we have sounds the same but only because we do not have the vocabulary to point out the differences. The difference between postexertional fatigue which is what they usually mean by fatigue and our postextertional malaise which has an immune component seems too subtle for many medics to get.

edited because I forgot my point!!! So while results from ms may be of some use we could also find ourselves in the position of doctors thinking everything was solved while we were still the same so they would say we did not want to get better and enjoyed being ill (as usual)

 

For me, I have fatigue per se. This along with brain fog are my worst 2 symptoms. For me, fatigue is not a diversion, it is a real issue.