Multiple sclerosis (MS) is a dreaded disease. About ten years into having chronic fatigue syndrome (ME/CFS), I still remember being tested for it and how thankful I was that I didn’t have it.
MS does things to people that ME/CFS doesn’t. For one thing, it kills more people and in a horrible way. According to one site, the average lifespan after an MS diagnosis is about 25 -35 years.
When people with MS die, they usually do so because they either kill themselves, or from an inability to carry out basic functions such as breathing or swallowing. Respiratory failure, pneumonia, sepsis and/or uremia are often listed as contributing causes on their death certificates. As in ME/CFS, a bedridden state increases the risk of all of these.
MS and chronic fatigue syndrome (ME/CFS) are both considered to be amongst the most fatiguing of all diseases. In fact, for many with MS, fatigue is their most debilitating symptom. Alan Light’s ME/CFS/MS study suggests that people with MS may be more fatigued than people with ME/CFS, but experience much less post-exertional malaise.
MS is known to be one of the most fatiguing diseases but ME/CFS is significantly more impairing.
The scientific literature suggests that many people with ME/CFS plateau at some point while a subset gets worse over time. Suicide rates appear to be elevated – two people with ME/CFS have committed suicide in the last month – and while some severely ill patients do die, studies suggest that death rates probably don’t nearly reach those in MS.
- A Memoriam To Bob – Gentle, compassionate, wise Bob died rather than being forced into a mental institution
How then to explain Leonard Jason’s study which found that people with ME/CFS were not just more functionally limited than MS patients but were significantly more limited?
Jason’s web-based study included 106 people with MS and 269 people with ME or CFS who were recruited online. The DePaul Symptom Questionnaire (DSQ) and Medical Outcomes Short Forms Health Survey (SF-36) were used to assess symptom severity and functional capacity.
Results
Some basic demographic factors separated the two groups; the ME/CFS group was older, less likely to be married and more likely to be on disability.
Functionally, the ME/CFS group was significantly more impaired than the MS patients. This wasn’t a case of subtle statistical differences. Except for on the emotional and mental functional scales – which were similar – the ME/CFS group scored far lower (lower is worse; higher is better in the SF-36) than the MS group.
The MS group reported twice the level of physical functioning (54 for MS, 26 for ME/CFS), scored ten times better on role physical (20.6, 2.6), were in considerably less pain (56.5, 36.0), had poor, but still greatly increased, vitality compared to the ME/CFS patients (26.3, 10.1), and were considerably less held back socially by their illness than the ME/CFS patients (54.0, 19.8).
Despite their significantly decreased functioning in all areas, the ME/CFS patients had similar “role emotional” and “role mental” scores as the MS patients.
The symptom assessments bore out the harsher world chronic fatigue syndrome (ME/CFS) patients face. Of the 54 symptoms assessed, 38 were significantly worse in the ME/CFS patients. (None were significantly worse for the MS patients.) The MS patients did experience significant post-exertional malaise but not to the extent that ME/CFS did, who generally reported about 50% higher scores.
Sleep problems where common in both diseases and, except for worsened unrefreshing sleep and insomnia in the ME/CFS group, were similar. Every pain symptom was significantly worse in the ME/CFS group. Even the neurocognitive symptoms were significantly increased in the ME/CFS group with particular issues with sensitivities to noise and bright lights.
Fibromyalgia Is No Walk in the Park Either
If studies from around the world were to reveal a consistent and serious pattern of impairment among people with FM, findings would stress the importance of addressing the health status burden of FM…. Hoffman and Dukes 2008
A similar pattern shows up in fibromyalgia. FM patients score low and high in the same SF-36 subscales (low: physical functioning, role physical, body pain, etc.; higher – emotional, mental) as ME/CFS patients.
When it comes to impaired functionality, few diseases can compete with FM. In one study, FM patients had significantly more physical limitations, impaired health, body pain, reduced vitality and impaired social functioning compared to people who just had widespread pain.
People with FM had a poorer overall health status than people with specific pain conditions that are widely accepted as impairing. Hoffman and Dukes 2008
Like ME/CFS, fibromyalgia is more functionally impairing that any disease it’s been tested against.
A 2008 analysis of several dozen studies found that FM patients were more impaired by their physical problems than people with lupus, chronic widespread pain, rheumatoid arthritis (RA) and primary Sjogren’s Syndrome (SS). Their vitality was significantly worse than people with lupus, RA, SS and myofascial pain syndrome. Their pain levels were worse than every other group tested.
When FM patients’ SF-36 scores were compared to normative scores for other serious diseases, FM came out ahead (or rather behind) in almost every instance. Every fibromyalgia SF-36 subscale score was “without exception” lower (worse) in FM patients compared to people with hypertension, heart attack and type II diabetes.
Except for role physical, FM patients were more limited in every way by their pain, by their lower vitality, by their emotional distress, by their social functioning, etc., than people with chronic obstructive pulmonary disorder (COPD) and congestive heart failure.
Impact
These findings suggest that the overall health status burden of FM is at least as great in magnitude as that of a variety of health conditions widely accepted as impairing. Hoffman and Dukes 2008
Numerous studies indicate, then, that fibromyalgia and ME/CFS are amongst the most difficult of all diseases to have. The fact that FM and ME/CFS inhibit functioning more than just about any other disease has been known for decades.
Remarkably, these findings have made little to no difference in the research funding each disease gets. The NIH – the biggest medical research funder in the world (@$36 billion/year) – spent $11 million on FM and $8 million on ME/CFS this year. Compare that to its spending on some of the diseases studies have shown place less of a burden on patients.
- Rheumatoid arthritis – $94 million
- Osteoarthritis – $79 million
- Multiple sclerosis – $101 million
- Lupus – $100 million
- Chronic Obstructive Pulmonary Disorder – $100 million
Two Disease Trajectories?
Clearly both FM and ME/CFS deserve much, much more funding, but ME/CFS appears to be slowly finding its way in the research world while fibromyalgia may actually be declining.
ME/CFS
With support from NIH Director Francis Collins and NINDS director Walter Koroshetz, funding for ME/CFS has climbed from an unbelievably low $5 million a couple of years ago to about $13 million this year. Three small NIH research-funded research centers have opened. A intensive intramural study is underway at the NIH’s research hospital.
From the Open Medicine Foundation to the Solve ME/CFS Initiative to the Simmaron Research Foundation to MERUK and Invest in ME, ME/CFS research foundations, while quite small, are, with their nimble research programs, contributing important insights to the field. They regularly hold symposiums and research workshops which bring researchers together and aid collaboration.
ME/CFS finally seems to have gained some momentum. The same is not true for fibromyalgia.
ME/CFS now has, thanks to the SMCI, a full-time paid advocate, plus with ME Action, it has its own kind of Act Up group which, among other things, has been engaging in direct actions. Advocates have helped ensure that the NIH and CDC programs have been almost entirely focused on pathophysiology for years. Advocates, largely driven by patient experts, have also been nipping away at CBT/GET’s dominance as treatments in Europe and the U.K.
Stories featuring ME/CFS now frequently appear in the media and help drive public support. The documentary Unrest and Jen Brea’s YouTube TED talk have further educated the public.
ME/CFS has a long, long way to achieve parity, but for the first time in years, it has some momentum.
Fibromyalgia
FM has three FDA approved drugs – something it’s hard for the ME/CFS community to even imagine. It also has greater disease recognition, a larger patient population and more doctors that know about the disease, but it appears to be losing ground in some ways.
NIH funding for FM is declining and is focused more and more on behavioral issues. I can’t find any evidence of significant advocacy. I’m not aware of any non-profit research foundations focused on FM. Nor do I know of international conferences that serve to bring patients and researchers together.
That’s surprising, given how many more people have FM than ME/CFS as well as FM’s incredibly busy Facebook sites and its many bloggers. You would never guess looking at the Facebook site or blog traffic which community is making the bigger difference in its future, but the answer is clear.
Why the ME/CFS community is moving forward right now in ways the FM community is not (research foundations, international conferences, active advocacy) is not clear, but it could simply be a product of chance. It may be that individuals focused on advocacy, research and collaboration showed up earlier in ME/CFS and got those balls rolling.
Here’s a recent example of an individual who has made a difference. A famous geneticist and inventor’s son comes down with ME/CFS. Five years later, that inventor, now leading an ME/CFS research foundation with a very active outreach program, receives a $5 million dollar grant from the Pineapple Foundation. Ron Davis just happened to show up in ME/CFS.
Whatever the reason, ME/CFS needs its “sister disease” FM to thrive and produce insights into pain and fatigue that it can benefit from and FM needs ME/CFS to do the same.
Fibromyalgia has strong points that ME/CFS does not have. It has the patient numbers to be a more powerful force for change. Pharmaceutical companies are actually interested in the disease. The fact that it’s an endpoint for patients who already have a pain disorder means FM has the potential of attracting widespread support. Much, much more is known about how pain is produced than fatigue, and pharmaceutical companies are interested in FM; they are not interested in ME/CFS at all. With some more help, FM has the potential to move more quickly than ME/CFS.
How to get the ball rolling in FM? One way would be to create a group of like-minded people, create a website, start pounding out alerts and blogs, get stories out to the media, become known in Washington and start pushing for change. The Institute of Medicine Report (now the Health and Medicine Division) made a huge difference for ME/CFS. Creating a similar report on the gaps in FM research and its needs would be powerful indeed.
Conclusions
How many doctors know that FM is, from day to day, more difficult to deal with than lupus, rheumatoid arthritis and primary Sjogren’s Syndrome? How many, if given the question – which disease is harder on its patients: MS, heart failure or ME/CFS – would answer it correctly?
Jason’s study may be discounted a bit by its use of an online questionnaire, but the answer to how profoundly difficult a disease ME/CFS is was answered over 20 years ago in Tony Komaroff’s 1996 Harvard study. That study – which used the same SF-36 questionnaire – found that 223 ME/CFS patients were significantly worse off on all the SF-36 subscales (except again the role emotional and mental subscales) than people with MS (n=25), heart attack (n=107), congestive heart failure (n=216), diabetes mellitus (n=163) and hypertension (n=2,809).
Those are shocking figures. One would think they would shock the National Institutes of Health (NIH) and CDC into exponentially increasing ME/CFS funding, but they haven’t – not yet – at least. Compare the $100 million a year in funding MS receives with the $11 million ME /CFS does.
Yet MS is either less, or about as prevalent, as ME/CFS. Its only real downside – and it is a real downside – is that it’s a bigger killer. As bad as MS is, ME/CFS is more likely to knock one out of the work force, produce disability, and leave one bedridden; i.e. from hour to hour and day to day, ME/CFS is a tougher disease to have.
(A case can be made for a “go slow” approach. A researcher I talked to at the recent Brain Science meeting said that moving too fast has damaged research fields after bad research which failed to produce results produced a backlash. It’s probably better to move slower at first in ME/CFS, build up a strong research foundation, and then really accelerate the funding. That said, the NIH is moving very slowly; this field could easily have handled more than the three very small research centers the NIH funded.)
The NIH is largely ignoring diseases that affect millions.
The fact that fibromyalgia is in the fix it is, despite the fact that it has some real assets that ME/CFS does not – including a good name, good name recognition and three FDA-approved drugs (vs. zero for ME/CFS) – should tell both the FM and ME/CFS communities something about their real needs.
A better name will not necessarily put ME/CFS on a new track. Nor will an approved drug. More fundamental problems, unfortunately, face ME/CFS and FM – the most serious of which is that the NIH simply has never appropriately funded diseases which do not generally kill, which mostly affect women, which have no visible manifestations and which produce symptoms which the NIH has historically never taken seriously, like pain and fatigue.
The NIH believes RA, with its swollen joints, deserves ample funding. It believes multiple sclerosis, with its neurological manifestations, demyelinated nerves and increased death rates, deserves ample funding. It believes lupus with its rashes, swollen joints, kidney damage, seizures and occasional deaths, deserves funding.
It clearly does not yet believe that ME/CFS and FM – which do not visibly attack major organ systems and largely remain mysteries – but which cause more functional impairment than MS, RA or lupus – are worthy of ample funding. If the seriousness of a disease was quantified by the amount of misery it produces and by economic impact it has, ME/CFS and FM would be deemed very serious diseases indeed, and treated appropriately. For all the NIH’s talk about the need to incorporate “illness burden” – the burden a disease places on society – into its funding decisions, the NIH is completely missing the boat on diseases like ME/CFS, FM and migraine, which impose high societal costs but generally do not kill.
That can be most clearly seen in the case of migraine – a horribly painful and at times debilitating disease which mostly affects women, which rarely kills but produces significant disability – and is vastly underfunded by the NIH. Despite being the third most common disease and the seventh most disabling disease in the world, migraine, this year, will get just a few more dollars from the NIH than chronic fatigue syndrome ($19-13 million).
There’s something very wrong with an institution which doesn’t show interest in some of the diseases that impact our societies the most. What FM, ME/CFS, migraine and similar diseases share is a fight to get the NIH and other funders to understand that they are responsible for supporting all Americans with health issues. That impaired functionality counts, and if it occurs earlier in life – thus removing a productive member from society from decades – it should count more than a disease which causes death at a later age. (There are statistics which quantify this.) In a sense, we’re asking the NIH to do what’s best for society and to grow a conscience and introduce a sense of moral responsibility into its funding decisions.
ME/CFS does not kill??? Jeez where have you been Cort..obviously not on the ‘In memory of’ sections of pheonix rising or science4me. So many are dying, not alone from suicide but from co morbidities or directly from ME itself. Recently in the U.K alone we had the death of a man in his 40s, he had severe M.E, a tracectomy a few years ago as a result of M.E and died a few weeks ago in his home naturally and could not be resuscitated. Another 34 year old male died in N Ireland, he was becoming increasingly weak from M.E, fell in the kitchen and hit his head, found dead in a pool of blood. We had Merryn Crofts, a beautiful 21 year old who fought M.E for 6 years, suffered horrendous pain and died naturally in her home in August 2017. That is justjust recently. Each time we lose a member of our M.E community a blue rose appears on people’s facebook profiles. I have seen so many blue roses.I am barely 2 years ill, now severe and the number of people we have lost from our community alone in that time frame is staggering. And as for M.E not attacking body organs, how about the subset that have cardiac issues, that die before their time from heart failure or heart attack???Montoya said in a recent presentation that M.E patients die younger than healthy controls. Sorry, I just find what I’ve read doesn’t match what I am seeing on forums. Lives and dreams are at stake. Severe M.E is existing,not living. It’s criminal how we are left to rot and die. Lots of doctors can’t even diagnose M.E so the true numbers lost aren’t even properly reflected. I love all your work Cort but what you have written here does not reflect the horrible truth of M.E.
You took the words out of my mouth Eimear. I’m somewhat surprised by those comments too.
Please read my reply to Eimear
While I agree with the premise of this… I have some issues with how its presented. I think its important to understand that there are a lot of PWME who also have A.I. disease. We are not an analog of ME, we are a subset of ME. Multiple members of my family are in this category, including myself.
That doesn’t mean that all people with AI diseases have ME. What I’m saying is that those of us who have AI-triggered ME suffer in the exact same way as post-infection-triggered ME.
Yes, there are differences in the immune responses. (thanks for Dr. Young for investigating this) But our PEM is nearly identical. We all have exertion intolerance.. and it destroys our lives. I get PEM doing the exact same things that others do… I get it when I talk for more than 10 minutes… or stand for more than a couple minutes. It takes the same amount of time to show up, and it lasts just as long… and it can send me to the E.R. in just the same way.
And even when my AI disease goes into remission (which is rare)… my ME never goes away.
Hi Hamtaro, I’m afraid I don’t know what AI disease is?
Thanks for your nice words Eimear but I don’t think I said that ME/CFS doesn’t kill.
This is what I wrote:
” and while some severely ill patients do die, death rates probably don’t nearly reach those in M.S.”
“the NIH simply has never appropriately funded diseases which do not generally kill, which mostly effect women, which have no visible manifestations and which produce symptoms which the NIH has historically never taken seriously, like pain and fatigue.”
I stand by that. My understanding is that ME/CFS GENERALLY does not kill. A lobbyist told me if people with ME/CFS were dying in large numbers we would be doing much better. So yes, some people do die but not like in MS and other diseases.
Several studies do not indicate that mortality rates are increased in ME/CFS. They include this one
https://www.ncbi.nlm.nih.gov/pubmed/26873808
https://www.ncbi.nlm.nih.gov/pubmed/16893495
There is the Jason study but it relied on self report cases from a website. Because it only included people who died and did not assess those deaths across a sample size (ie it did not include people who did not die) it’s hard to assess.
In general the adage regarding mortality in ME/CFS is that the good news is that it doesn’t kill you and the bad news is that it doesn’t kill you.
So yes some people do die of ME/CFS – I never said they didn’t – but in general people don’t. I think most doctors would agree with that.
Cort, I agree with you here.
I believe that any argument put forward to the HIH in favour of ME/CFS research has to be inline with the research & scientific methods that other medical research funding puts forward and as Cort says, if the death rates we higher we would get more attention.
How do you attribute the death of someone from ME/CFS when we don’t have a diagnostic tool to say they have the disease? So I would think many death certificates would list organ failure or a cause not directly associated with ME/CFS.
Did you know we only have a Syndrome, not a recognized disease!
Cort, I appreciate your work so much and as such I am supportive. However, the first study you cited says that death from CFS is uncertain. I strongly believe the responsible thing to do is to err on the side of uncertainty until there are enough big data studies to indicate otherwise. We can hardly know how many lives are taken by a disease which is vastly under diagnosed and grossly underfunded. Diseases that kill are often not named, as such, on death certificates. E.g. Alzheimer’s patients often die from pneumonia. Thank you for all you do, Cort.
Thanks Alisa!
At the risk of inflaming people further (:)) I want to point out that that study as with the Buchwald study attempted to see what happened over six years to people who had visited an ME/CFS clinic. (I know its wasn’t a good ME/CFS clinic).
It’s possible that wasn’t a long enough time and I have a very rudimentary knowledge of statistics but it was a large study (over 2000 patients) and I would think that theoretically it would show increased rates of mortality. I say that with the idea that most people with ME/CFS who get severely ill don’t fall apart all at once and get a chance to go a clinic and so would be in their database.
It’s possible with this study that they had some non-ME/CFS patients in there. That’s probably a possibility with the Buchwald study although I would think the UK group would be good at screening out depressed patients who do not have ME/CFS.
AI is Adrenal Insufficiency which can be Primary Adrenal Insufficiency (PAI) or Secondary Adrenal Insufficiency (SAI). I never heard of it either until I was diagnosed with Secondary Adrenal Insufficiency in Oct 2016. In both cases our cortisol levels drop to dangerously low levels. It is not the same as Adrenal Fatigue. It is a life threatening disease in which the body is no longer able to provide sufficient cortisol. PAI is also called Addison’s Disease. It is caused by a disease of the adrenal glands. SAI is caused by an inflamed pituitary or hypothalamus gland. The ACTH signal is not sent to the adrenals to release cortisol, but the adrenals themselves are fine. Sometimes, people have both PAI,and SAI. It’s sometimes compared to a diabetic who can no longer produce insulin. We can no longer produce adequate cortisol levels, so we become dependent on steroids which convert to cortisol in the body. Every ME/CFS patient should get there cortisol checked by a plasma cortisol test before 9 a.m. If it is less than 5 mg that is very suspicious. If they follow up with an ACTH blood test and it is above normal that indicates PAI. If it is below normal that indicates SAI. You’re primary care Dr, PA, or ARNP can order those labs. At Quest labs a normal cortisol range is 10-26 mg.
For three years or more I went undiagnosed. I lost 35 lbs, and was having multiple A-Fibrillation attacks. Now that I am on steroids I no longer have A-Fibrillation attacks, but do have tacchycardia when my cortisol drops too low.
There are 6,000,000 people in the U.S. who are going undiagnosed. There are some very good Adrenal Insufficiency Support groups on Facebook if anyone has questions or concerns about AI. The Facebook groups have kept me alive. You generally don’t get very good patient education from Dr’s or Endocrinologist’s on how to manage AI.
Will a gp.test in UK 27 years CFS now fybromyalgia
There’s no real evidence that heart attack or heart failure is increased in ME/CFS – and I don’t know why they should be having heart attacks. Even Cheney who long championed that idea that an atypical heart failure is present in ME/CFS said it did not end in death – that’s one of the reason he thought it was atypical. He should know after seeing so many patients and delving into this area so deeply.
I just saw a specialist at Sanford and he did say that the heart palpitations I have are part of ME. He even said that he has a patient with a pacemaker because of the disease. And, I was just confirmed by him to have this disease, all my previous doctors said it was Chronic FM, but my symptoms are both hence I have both conditions. I did appreciate your article and the information. What I am finding is we need people out there writing articles and letting people know how devastating CFS/ME/FM and so thank you.
Thanks. Interesting. I wonder if the pacemaker was the needed because of a viral attack on the heart which initiated ME/CFS.
Do you how he connected the palpitations to ME/CFS? What the link was? That would be fascinating to know.
I bet it was because of heds I have heds
For more then a year, my hart often “4-tacted” meaning rather then it producing one clear beat it did produce several identical smaller ones. It resembled a lot fibrillation but it was with a fixed rhythm, only way too fast.
That “4-tacting” happened very clearly on over half the nights, (near) always at the end of the night / the early morning still trying to sleep. Those nights often were even less refreshing. The clear “4-tacting” usually lasted about 1 hour, sometimes 2. Less pronounced arrhythmias happened every night, lasting anywhere from 2 to 5 hours.
Such pronounced arrhythmias could well be considered hart problems and may be treated with pacemakers.
I did however found another way out (for my personal case): gently improving blood flow at night by doing easy blood flow exercises (mainly legs) and breathing exercises several times at night.
It does make sense somehow: if blood flow is very poor it often is the returning of blood to the hart that is problematic. Poor hart prefill is common in ME. So are (very) low blood volumes. They make returning blood to the hart difficult. Constricted blood vessels, inflammation and inflexible RBC further hamper blood flowing back to the hart.
As an engineer I do know that in mechanical pumps cavitation is a *very* damaging event for a pump. It happens when pressure at the low pressure (entry) of the pump gets too low by the pumping action. The water then starts to boil at room temperature. It forms tiny water damp bubbles that are *very* hard. When they make contact with the pump metal they often implode and cause mechanical shock waves. End result: a high quality pump can be destroyed in a matter of hours. The metal blades then look like Swiss cheese.
What has it to do with ME and hart arrhythmias? If blood flows too slow back to the hart and the first hart chamber expands, a similar strong under-pressure happens. If it is remotely as damaging as what happens in a pump then it is a *very* harsh situation to this hart chamber. Besides, blood partially boiling in your veins at room temperature does sound wrong too.
Potential solution of this problem: let the hart not expand as fast. Problem with that: then the hart pumps far too few blood per minute as pumped blood equals: beats per minute times displaced volume per beat.
Solution to that? Beat very fast so that beats per minute times displaced volume per beat gets sufficiently high. It wast just that what happened with me at night. And it was that what happened before during the day too but without hart arrhythmias. I used to have around 95 hart beats per minute at rest during the day, probably coupled with low stroke volume (as many ME patients have small harts and poor hart prefill rates).
Heart issues occur through side effeects of medications used as front line treatments fot FB such as the tricyclic antidepressant Amytriptiline. Also lack of sleep, poor sleep quality eventually will affect your ability to function normally i.e. exercise (walking) and recovery from exercice. Higher levels of “stress” hormones as a result of both if these results in aggaravating heart conditions. This is my experience.
thank you so much for saving me a lot of typing! I was going to say the exact same thing but with much less knowledge of detailed facts.
I’m not sure if you mentioned the suicide aspect of it? but we have one heck of a high suicide rate. and while I’m not suicidal, I would be lying if I said that I fear death. In all actuality I’m doing the best I can to be what I am still able to be in the role of mother and first time grandma 2 too little people that for some reason get excited when they come over here even though Grandma’s stuck in a bed. It’s so surprising to me when I see the look on their faces when they see me. I am not able to do much of anything except adore and love interacting with them even if it’s just silly little games that you can play. My grandson is very good with my power chair. he has been since he Turn 2 years old. I can’t even navigate it because my visual mapping is so far off. I have a very hard time even driving it in a straight line.
I have a 17 year old daughter that still needs to have me here. if nothing else the benefits the taxpayers are paying for me allows there to be shelter over my child’s head. I I am of no other use as a mother that I can see because of this degree of debilitation. people don’t understand this disease is not simply a worn-out Feeling that lands you in a bed. and that laying their offers you plenty of reading time and catching up on TV shows. it’s not the case because of the neurocognitive fatigue. there is no reading in bed. I only use the small bit of ability to read and write that I still retain four important reading. such as writing this after having read the article first. I’m already having trouble keeping my eyes open and my breathing isn’t regular.I noticed about when something takes a lot of Focus or concentration and attention span that I hold my breath. it’s as if I’m straining as hard as I can and forgetting to breathe. when I say multitasking is extremely difficult I’m not talking about building a dog house and baking cookies at the same time here. I’m talking remembering to breathe when I’m trying to write. I think that that is a far cry from what we think of when we say “multitasking” and something else to consider. Exceeding your limits in any way be it having too much light exposure for your brain to handle, or having walked to the mailbox and worn your legs out. the end result is exacerbation of all symptoms within the patient’s cluster of symptoms. when I write in the comments I am going to have higher pain levels and more difficult time being ambulatory at all within my home Etc. I already have one eye closed breathing open mouth and now have dry mouth, and I’m seeing little sparkly lights and with the narrowing of vision. having Darkness Darkness coming in from all sides of my field of vision indicates orthostatic intolerance from too much effort mentally.
Before I have to assume a head down feet up position I’d like to say that death is the only Bang that can treat Lorde horrible symptoms and issues mentally physically cognitively that I have been suffering with for 12 years. the treatment is the release from the symptoms via no longer being alive. and that is frightening. but unfortunately it is also the only way far too many people can see to finally have some relief with the absolute living hell this disease is.
But I still do not in any way approve of suicide as an option for myself and I wish others with m e CFS didn’t consider it should be an option as well.
I’m beginning to have a very big issue with the word fatigue. I do not feel tired. I don’t yawn anymore even. I’m not tired! I am not sleepy! I’m experiencing system failure. if it’s muscles I’m using they fail very rapidly. doing too much mental work knocks me out cold and also intensifies symptoms the same as physical work does. I think we need to have a different word than fatigue. I have some areas of paralysis. and if I lose much more of what I am able to do, I’m not going to be you tired to lift a finger. I am going to be unable to make my finger obey the signal from my brain. it is absolute failure of A System’s ability to function. going to sleep far more resembles passing out or losing consciousness. and not being able to hold my hand up long enough to even put on some mascara isn’t that I’m tired and I need to go to sleep. it’s muscle failure. and I see that from the perspective of a person that enjoyed lifting weights throughout most of my life. I know what temporary muscle failure is. and that’s exactly how this feels. What’s going to happen when my heart muscle fails? I suspect I’ll die from it
Thank you for writing this comment in spite of what it cost you! This is my experience as well, though I am not as sick ad you. I relate to your descriptions, especially the neurocognitive System failure and the sensation of heart and lung failure, having to concentrate in order to breathe. Feeling as if I have Alzheimer’s, autism, and ADD all together. My cognitive function is very limited. This aspect is not as well researched as the physical limits unfortunatrly. It would be good to see some 2day mental exertion tests and light/noise exposure tests compared to physical exertion tests. God bless you.
I thought I was the only one that had to remind myself to breathe. I also have to pass out after mental work. I have anxiety about having to do anything and everything. Good to know I’m not alone, but sad to know I’m not alone.
I’ll bet this in some form is actually pretty common in ME/CFS. For me the body freezes up and forgets to believe. I too have the strange anxiety kind of thing…Very strange – could be due to low blood volume.
Just rereading this piece. Your comment is so accurate for me. I wish I could share it with others to illustrate what my life is really like but I don’t want to seem like a “drama queen”. I know people can’t relate and don’t want to hear. I have found solace in the renewed interest in ME/CFS due to long haul covid which is sad as I would not wish this on anyone. I am 67 and have suffered since 13 years old or maybe even longer but that is when I contracted mono. The lack of information etcetera kept making me continually get better and then relapse with no understanding myself. The judgment and criticism from family and friends has hurt me deeply. Such a cruel disease. Blessings to all of you
Your comment is from soooooo long ago, but I’m still responding. I’m so glad you mentioned the bit about holding your hand up long enough to put mascara on as an example of how fatigue isn’t being sleepy. It irks me to no end to be considered sleepy when I am fatigued. I always equate it to the feeling when you raise your hand to be called upon, but then wait there for a long time, eventually it feels heavy and exhausted and in need of being put down, or after lifting weights for a period of time when your body says no more. Even in normal people…after a period of time this happens….just for me…I feel that from holding my phone up to my ear to have a short conversation….it just happens so quickly and in situations where most wouldn’t feel that way at all. Hell theres times that my chewing muscles need rest in the middle of a meal, or my talking muscles feel like I’ve been yammering on for far too long and just needs me to shutup even though I’ve only had a two minute conversation. My cfs is of a remitting/relapsing variety and I have had years in between. 2007 bad for months and months i clearly remember then exhausted holding up the phone to my ear or climbing the stairs to my home….then good until like 2011/2012 then bad for months and months again. That time I clearly remember having to take breaks from chewing during meals, being exhausted from talking, my arms being too exhausted to hold dishes up/wash them. Then fine again. Now here I am again….walking feels like my legs are so heavy and tired, arms get exhausted super fast, starting to need chew breaks again. Just frustrating to feel like you have no actual physical energy to exist properly….that being said…I’m wide awake. I am not sleepy. However I need more “rest” which is frustrating because it just makes me feel like I’m lazy even though that isn’t the case.
Well said Eimear ! Thought the exact same myself. Deaths may not be recorded as ME that is the issue but this shoudl ahve been made clear in the article ad you have !!
Again, the issue was why ME/CFS doesn’t receive the funding that it should. Until studies showing higher mortality rates are present in ME/CFS the deaths will make no difference in funding. That was what I tried to make clear.
I might throw some statistics off. I’ve been ill since June 1981. I just turned 80 this year. I can and do drive, but always have to plan to rest up for a week after driving to the nearest Walmart, 81 miles away.
I’ve known of some awful suicides: Two women went, one at a time, to Dr. Kevorkian. And one young man who knew damn good and well that he was sick, and was being treated with contempt, sat on the stairs of the California capitol, doused himself with gasoline, and lit a match! I hear of at least two deaths by suicide each month. I recall one lady asking if we had to publish those suicides, as it was painful for her to read. But we have to have all the weapons we can to get anywhere! It took me 6 years to get a diagnosis. I lost my marriage, my career, (Though I kept on working for 9 more years, and the quality of my work never declined by one iota. And I did not leave my aerospace job until I left it for the SEVENTH time, by ambulance!) Nobody can say I did not try. And nobody can call me a hypochondriac or a malingerer! I have both ME and FMS. I’m in terrible pain as I write this. But I will NOT take my own life. Keep up the good work, and keep yelling.
I have the same but found out I have heds autism ADHD causation genes for it do you my father has it to 75
I’m not sure about why the fibromyalgia community is not more organized, but when I read your questions about that, my own experience came to mind. I came down with fibromyalgia about two years before ME/CFS hit me. With fibro, I was achy, but I could still think, still work, still do house work and some light exercise (walking mostly). When ME/CFS came on, it was almost “lights out.” I was so ill so much of the time, I couldn’t show up, couldn’t think when I did, and ultimately, I lost my job. Fibromyalgia is recognized and has some drugs that are supposed to treat it. At least for me, fibro impacted my life far less than ME/CFS. I’d fill in the blank about why the fibro community isn’t more organized with its level of severity and level of recognition in mind.
I have CFS/ME plus related illnesses, and mydsughter has Fibromyalgia and possible MS. We are about equally disabled.
However, I know people with fibromyalgia who have near normal lives – they are capable of working full-time, and have only needed to cut back on secondary comittments and social obligations.
I think the definition of fibromyalgia allows for a broader range of patient functioning – but I’m notan expert on that, lol.
It’s a problem that some people with “fibromyalgia” can function fairly well while others are quite ill. There needs to be clearer delineation (separate diagnoses) between these levels of illness. Also before becoming quite sick I believe I had fibromyalgia for years but no doctor ever mentioned it. Primary care doctors should be required to use one of the new fibro DNA tests whenever any client complains of pain or fatigue.
I’d also note that some of us “functional” people with fibromyalgia do so because we have to. My pain levels are an 8-9, every day. I’m in tears every day because of my pain. All I want to do is curl up and bawl somewhere.
I can’t. I am my mom’s caretaker after the nursing home kicked her out in favor of a (higher paying) private pay patient and physical therapy dropped her because they weren’t getting enough money.
I love my husband, but I’m his caretaker in many ways as well.
We have no society support. Mom’s church barely can call once every six months, never mind someone to sit with her for an hour so I can rest, or even run errands. I have very little support online.
To everyone else I am “functional”.
In truth? I’m a dead person walking, because my life is gone. Being “functional” is a curse, because it means I get no help. (As mentioned further down, I live in a rural part of the US where doctors don’t believe in fibromyalgia. I was verbally abused at my last appointment earlier this month and told since Lyrica didn’t help, I don’t have it, and I must be crazy and need Lithium.)
Fibromyalgia has 3 different classifications…primary, secondary and regional. Primary is the worst and regional the least. Regional means they only have FM in on small area of the body, but it can move around and it doesn’t always hurt
Secondary means they have FM all over, but not all the time. Primary is all the time at its worst. I have heard there might be even more classifications, but these are the only ones I know. I guess the different classifications are why some can still work while others, like me, are bedridden.
Check out rccx gene theory my father has CFS release remission type list my mum to severe ms last year do you both have heds hypomobility genes for it
I’ve heard that – the FM was bad but it was the ME/CFS that really wiped me out. Severe FM is really, really bad – I’ve seen some horrible stories – but in general I think the subset of severe ME/CFS patients is larger and they are in worse shape.
Notice how connected these two diseases can be though! Strangely enough there is very little research comparing the two.
A comment to ‘Mary C’:
All us suffers know that stress (of any type, physical, mental, emotional) worsens our pathetic state & you have lots of stressors.
Not having any effective treatments or drugs, one thing we CAN do in the meantime is minimize stress.
The link I’ll include is with a doctor, Gabor Mate, I’ve spoken with & while I think he may overstate his thesis, I think that you & a lot reading this blog will have a gut feeling that he’s on really to something.
He’s written a number of very popular, widely translated books such as “When the Body Says NO” (that impressed me because it theorizes what makes us susceptible to disease of any type) & if you look on youtube (enter “when the body says no” or even Gabor Mate) you’ll hear many of his seminars.
Here’s one: https://www.youtube.com/watch?v=Qf92l7FPyKo&t=431s
I appreciate reading that others have been ‘abused’ by their doctors as I have & have found a very effective way to deal with them:
I say “you need to read what CDC Atlanta & Mayo clinic says about ME/CFS because they understand somewhat my condition. I believe them more than you!”
Mary C., I live in the city and still have doctors that don’t believe in my FM. I also have herniated discs so I don’t have to listen to my Pain Management doctor scream at me about how my FM is all in my head. I have found that more Persian or Middle Eastern and also East Indian doctors don’t believe in FM or ME/CFS than other races. I don’t mean ALL of them are this way so don’t get mad at me. It’s just what I’ve come across. I had one doctor that came right out and said that he didn’t care if I died. He was taking me off all pain med without giving me anything for my withdrawal symptoms. I found out he did the same to about 50 to 100 other people just like me. I should have sued him for malpractice. What ever happened to the oath doctors took to first do no harm??? This doctor refused to send me to Rheumatology or Pain Management. He told me that he talked to them and they said I wasn’t bad off enough. They never even laid eyes on me. I left that office and within 2 days I had a Pain Management doctor in a different office. I guess I was bad off enough after all. Along with my FM, I have numerous herniated discs as well as Osteo and Rheumatoid Arthritis so I am more than bad off.
I really think its a matter of chance. Some people and an organization (SMCI) very committed to advocacy showed up early and carried that torch in ME/CFS. we also had some really dynamic advocates early on. It’s been a constant theme.
Individuals can make a huge difference. Look at what Jen Brea and Beth Mazur created with the ME Action network and what Jen has done with Unrest and her TED talk. That movie has spawned so many action and created a way for so many people to get involved.
Unfortunately for her – and luckily for us – Jen just happened to show up in ME/CFS. Fibromyalgia has not found is Jen Brea yet. She/he is definitely out there. She/he could be reading this right now.
Living in London UK, the NHS no longer exists. 8,000 Multiple Sclerosis Patents signed a petition to send to Social Services complaining of lack of care or support from Neurology Doctors UK. 4 out of 5 MS Patients not diagnosed. MRI scans showing numerous white matter lesions in Brain Stem, denied MS by neuroradiologists as MS is a financial drain on social services. Demyelination of brain stem and brain shrinkage. Cervical C3-C4, C5 C6 C7
Stenosed. Fibromyalgia throughout spine, chronic fatigue syndrome. Lumber L4/5 stenosed. Bladder infections, patela femoral disease both knees. Lung infections, Aortic valve stenosis, 35,000 Patients dying yearly, symptoms ignored. Facial Manifestations trigeminal neuralgia, double vision, peripheral lesion Cerebellum causing ataxia. Wide awake, unable to sleep but thinking about all of the brain damaged people across the pond, sending love peace and joy in abundance, you are not alone. Catherine x
Weren’t they reported in MRI results that’s fraud then my mum had severe ms I have CFS fybromyalgia as my father has CFS 2 MRIs both clear hope they are now read that
I would also say that, because it is largely a pain condition, FM can potentially benefit from some of the pain research currently being undertaken. I believe that various researchers are looking at the pain system, from various angles presumably, and may uncover something that can be applied in FM. If they understand the system as a whole better, then they can pinpoint better what’s going wrong in different pain disorders.
Agreed. This is another area where FM is considerably ahead of ME/CFS. I recently heard from someone who contacted a pharma drug company. The Pharma rep had absolutely no interest in ME/CFS. He considered it a waste-basket illness and until there was a biomarker he didn’t believe drug companies would touch it.
Compare that with two drugs that have undergone large clinical trials in FM over the past year or so and another drug trial (Pridgen’s) in the works.
Plus much more pain research than fatigue research is being done so a breakthrough there could help in FM. We have to be careful though. Unlike other pain disorders FM is more than pain – it produces many more symptoms (sleep, cognitive issues, more fatigue, more PEM probably and problems with stimuli) so a drug that works in another pain disorder may not be that effective in FM. On other hand it might be.
I would like to add to the Fibromyalgia symptom list as I get the impression that many distinguish between Fibromyalgia and ME Chronic Fatigue Syndrome… that fatigue goes with the latter and pain goes with Fibromyalgia… I was diagnosed with Fibromyalgia post neck whiplash after a motor vehicle accident that year…1998 (my 20 year anniversary this year)
My pain & fatigue levels have been unrelenting and are in correlation with each other.. if my pain levels are bad my fatigue levels match it and the cogniive impairment matches those levels as well..
My Fibromyalgia specialist who is also a Fibromyalgia researcher here in Australia (he was part of some of the original brain blood flow research and still researches today) he always explains to me that my body may be experiencing some of the pain as fatigue as it may be the way my body and others express the pain if that makes sense..
I have never understood the link between these two syndromes nor have I understood the differences and often wondered whther it just depended on who did your original diagnosis as to which syndrome you got labeled with. However everything I know about the two tells me I have the correct diagnosis of FMS
But please don’t be under any illusion that Fibromyalgia doesn’t have fatigue because after being one of the Fibromyalgia advisors here for a few years most people I spoke to with the Fibromyalgia diagnosis had fatigue and terrible cognitive issues… the awful brain fog! Among all the other symptoms that went along with it
The majority I spoke to all were quite debilitated and the person that has mentioned in here already that they are severely effected but due to their circumstances have to continue to work… there is no choice.. many I met had this issue as well. In my state we are still unfortunately being run by a group of medical specialists that believe these syndromes are more psychological and that the only approved treatment for Fibromyalgia is exercise……
So doctors here that are trying to look after us are not getting specialist support for many of their severely affected clients..
Even though I have managed to get myself managed reasonably well I am quite disabled and bed bound more than not… my life function is not great and coming from a medical background myself would have loved to pursue getting more funding and research going but I am not well or functional enough to be able to work on it enough.. that is the big problem our once very active group found.
NIH haven’t a clue about the death rates from M.E. Nobody really knows but from the forums,people are dying and it’s heartbreaking and so wrong. M.E has taken my career, friends, hobbies, ability to exercise, I use a wheelchair, I barely have energy for that some days. I cannot mother my children. It’s beyond description all it takes in such a short time frame. NIH are aware of those that are entirely bedridden, young men and women, locked imprisoned for years. I cannot fathom why they don’t do more. Where is their basic humanity.
I think it’s pretty obvious that with the NIH at least with this disease basic humanity has not come into play regarding funding – at least not until recently and not enough. I think it is coming in to play to some extent. I think that it was the fact that people w can’t get so ill so quickly that disturbed Francis Collins. He basically said that these people are very sick and we have an obligation to try to help them. That said = we need a lot more resources.
Absolutely, we need much more. Francis Collins did step up but it’s not enough by a long shot. We can only hope the funding levels continue to move in the right direction.
‘Basic Humanity’ has too much competition with the millions that large drug companies are making from our symptoms.
We, in Australia, now have testing, treatments, drugs & cures for certain kinds of cancer.
But I’ll bet that large drug companies would prefer no cures are found for the common cold, for example, as they make millions from over-the-counter cold remedies.
Cure will always have competition with $$$$$
Cort, do you know if anyone has ever done a survey of how many patients who have ME/CFS also have another disease like fibromyalgia, rheumatoid arthritis, MS, etc? Although I don’t count myself amongst the severely ill with ME/CFS, having moderate versions of 3 of these diseases I can definitely identify with Eimear Forde’s comment that having severe M.E is existing,not living. It’s a mind-numbing balancing act to keep them all at manageable levels. I am curious as to the percentage of patients who are afflicted with more than 1 disease. Seems that kind of statistic, if large enough should catch somebody’s attention at NIH.
I agree with the above mentioned comments. of course people are dying in large numbers from me/cfs. Cort you have to look at all the misunderstanding and comorbid conditions it causes. For instance forget that I cant get out of bed. lets talk about the heart issues the cancers there is so much going on in our bodies from me/cfs. Doctors dont know what they dont know.It will come out for sure but not for another 20 years I’m afraid. I had three cancers from ME/cfs not inspite but because of cfs. cancer does not run in my family at all. Ive lead a very healthy clean life. This disease is definitly causing cancers and other types of deaths. The more we start paying for reserch and doctors start opening there eyes they will understand the obvious connections, Are you serious here???? there are so many things going wrong with the body is amazing to hear these statements. JUST WRONG futher i heard that some doctors know this but dont want to alarm the cfs community. Well i think its time
I agree. You would think a lot of people would be dying from ME/CFS because of how sick they are. Ron Davis has mused why more people DON’T die. After all people with ME/CFS are less functional than just about anyone.
But check out this study by Dedra Buchwald. You can say that the severely ill don’t make it to doctors office but my guess is that before they get severely ill they probably DO make it to a doctors office.
https://www.ncbi.nlm.nih.gov/pubmed/16893495
Buchwald followed over 1200 patients who came to clinic for over 14 years. Surely some of them came down with severe ME/CFS at some point but surprisingly – I assure you that it really surprises me – she did not find a significantly increased risk of mortality.
I don’t know how to balance the known fact of people dying. Maybe she had a different patient sample. I don’t know.
Hi Jimmy, sorry to hear about your condition. And I hear and understand why you see ME/CFS has other comorbid conditions. However I’d need to see the data to support that.
Cort has shown the research to prove otherwise, yet people on here making comments have only anecdotal accounts of this. There’s a hypothesis that suggest ME/CFS has higher non-Hodgkin’s lymphoma cases, and at times I’ve read 5% of elderly ME/CFS patients will get it. However I’m yet to read any actual proof from a credible research source. It maybe eventually be proven true.
I think if we are to be discussing issues and making accusations then we need to understand statistics and produce the evidence from legitimate research source links. Cort has done just that and produced the evidence for why he wrote what he did. I suggest people read the study links he provided.
Attacking the very person who has dedicated years reading the evidence and putting it in laymans terms for us is not fair on him.
From my understanding Cort also set up Phoenix Rising and run that for years too, is that correct Cort?
Right there is evidence, which does indicate an increased risk of Hodgkins Lymphoma in ME/CFS. That sounds really alarming but we should note that that disease is still VERY rare in ME/CFS; it just appears to be increased. In other words I don’t think its something for any one of us to really worry but the fact that rates of that cancer appear to be increased could provide a clue as what’s going on in ME/CFS.
https://www.ncbi.nlm.nih.gov/pubmed/22648858
The first study to suggest increased incidence was this one – https://www.ncbi.nlm.nih.gov/pubmed/9590603. Dr. Peterson, I think, initiated both studies.
Yes, I created Phoenix Rising I think in 2004 and ran I think until Dec 2012….
I haven’t been able to read all the comments but may try again tomorrow. I found the article quite interesting. I’m based in the UK but don’t think we have any different understanding over here. I really wanted to comment about the people comparing ME and Fibro symptoms. I really don’t think it should be a competition to see who is the worst off, i believe both conditions have people who are able to function, some have ability, some necessity and desperation , and equally i know that both conditions will have people who suffer such utter torment they would welcome death. They are both cruel and painful and both massively misunderstood , misbelieved and misdiagnosed. Yes they say there are treatments for Fibromylagia , as someone who has tried every single treatment, i can tell you there may be some that say they are for fibromyalgia but i personally don’y Know anyone who’s benefited from them yet. I spent the majority of my time in bed, if i manage out of bed then I’m too tired and sore to do anything . I can venture outdoors but rarely do so because it takes so much of everything i have and the recovery takes longer and longer. But on a day i need to go to the pain clinic a neighbour might see me venture outdoors. I can hear them say, she doesnt look that bad. Surely we get enough of that from everyone else without making assumptions about each other. We are all in such similar positions we need to support each other. We’re the only ones who truly understand each other. I know that clinically they are different conditions but I’m pretty sure a patient from each would provide a more or less identical list of symptoms . They may just change the order or priority a little. To me any research, studies, reports etc are good. Even if not accurate it proves that someone is trying. Someone out there in this world of isolation is trying to find a way out for us, and the best way to find it is to be united x
Jimmy, can I ask what type of cancers? I was googling lymphoma and found 3 forms of that are more common in m.e/cfs than the general population. Only asking as I have a biopsy on Monday next week for a neck lump. Surgeon thinks its a lump on the thyroid gland.
Hidkuns lymphomas
What cancer is related my father had skin cancer had and still has CFS I have CFS fybromyalgia
There have been a number of studies that look at comorbidity in ME/CFS but not nearly to the extent of those done in FM. To my recollection they tend to look at existence of diseases like FM, IBS (and mood disorders) but rarely look at disease outside the fold such as MS or RH.
Here’s one on MS and ME/CFS though which found that about 15% of MS patients fulfilled the Fukuda Criteria for ME/CFS.
NeuroRehabilitation. 2014;35(3):529-34. doi: 10.3233/NRE-141146.
Multiple Sclerosis/Chronic Fatigue Syndrome overlap: When two common disorders collide.
Gaber TA1, Oo WW2, Ringrose H3.
INTRODUCTION:
Fatigue is a major cause of disability and handicap in Multiple Sclerosis (MS) patients. The management of this common problem is often difficult. Chronic Fatigue Syndrome (CFS/ME) is another common cause of fatigue which is prevalent in the same population of middle aged females commonly affected by MS.
AIM:
This report aims at examining the potential coexistence of MS and CFS/ME in the same patients.
METHOD:
This is a retrospective study examining a cohort of MS patients referred for rehabilitation. The subjects were screened for CFS/ME symptoms.
RESULTS:
Sixty-four MS patients (43 females) were screened for CFS/ME. Nine patients (14%) with a mean age 52 (SD 9.7) who were all females fulfilled the Fukuda criteria for diagnosis of CFS/ME. Their symptoms, including muscular and joint pain, malaise and recurrent headaches, were not explained by the pattern of their MS.
DISCUSSION:
MS and CFS/ME are two common conditions with increased prevalence in middle aged females. As the diagnosis of CFS/ME is clinical with no positive clinical signs or investigations; it can be made with difficulty in the presence of another clear explanation for the disabling fatigue. Our results suggest that the two conditions may co-exist. Considering CFS/ME as a potential co-morbidity may lead to more focused and appropriate management.
Speaking of co-morbidities, I occasionally pop into this discussion because in addition to having CFS/ME and fibromyalgia-like symptoms, I have the underlying condition of Ehlers-Danlos Syndrome, and I most definitely think they all have some kind of relationship. Autoimmune disorders are also more highly correlated with EDS as well–and my mother had RA and my aunt had Lupus–and both likely were born with EDS.
Ehlers-Danlos is another disorder which flies under the radar of many doctors, but symptoms like POTS, small fiber neuropathy, gastrointestinal problems, pain and fatigue–especially fatigue–are symptoms which appear in high percentages of people with EDS.
Many in the EDS community manage well enough until some stressor in their lives brings them down–and by stressor, it could be an illness or accident or even menopause (since women are the ones mostly affected). Others, such as myself have had symptoms since birth.
I follow the ME/CFS community with interest because I think when treatments and answers are found, they will help all related conditions.
Thank you Cort for being the lifeline between the research community and the patients. People with these lingering afflictions do sometimes die from them, but mostly we have the life sapped out of us while a good portion of the research community twiddles their thumbs because ‘we don’t look all that sick.’ You can count yourself as one of the people, like Jen who are helping to raise consciousness about these insidious diseases.
Thanks. I’m on the other side. I look into EDS research precisely for the same reason that you’re checking out ME/CFS 🙂 Perhaps autoimmunity is going to be the tie that binds all these diseases together. I wouldn’t be surprised at all.
I have heds autism fybromyalgia CFS yes all connected
Julie Inglis I agee 100% I also have fibromyalgia
its brutal and do not wish this on anyone
Hi Cort,
Here I am 14 years into my CFS…I no longer feel I have the FM because my pain levels have decreased quite a bit in the past five years or so. I am privileged to have been hit later in life, in my fifties, so it didn’t rob me of my parenting abilities back in the day.
I have learned just how much my body and mind can tolerate, keeping my energy usage at a minimum throughout the day. I sleep late, rest with come coffee for the first hour or two of the day, then clean myself up (which is a task in itself) for the day. Housekeeping is minimal for me as we now live in a fifth wheel. There is still the same cleaning to do, just less space to clean. With two dogs it can get overwhelming at times and yes, the noise and light is oftentimes ugly. Having an understanding husband makes a great difference, giving me that companionship without demands and he doesn’t mind that I am a permanent fixture in our home.
At the age of 65 now, my socializing is zilch but I don’t let that get to me. My husband does the grocery shopping and he takes me out to dinner or lunch a few times a month. The key for me has been minimal task, rest rest rest. and repeat throughout the day.
We are moving full time to the Oregon Coast so I am hoping that good salt air might improve my overall health somewhat. The coast remains cool throughout the summer in Oregon which is awesome because the heat can be intolerable.
I pray for God to guide me through each day. Being a Christian has been so profoundly good for me. Take care Cort…I hope your health is doing fairly well….Brenda
I agree with your rest, rest & more rest, Brenda. You are lucky to have an understanding husband.
I go to bed late and get up late. If I’ve been in pain during the night or even, awake most of the night (which rarely happens now), I just stay in bed until I feel fully rested.
Stopping full-time work in 2010 and now living on a frugal disability pension has been a lifesaver for me. Being single and no social life or commitments means complete freedom for me to do what I want, when I want. If I’m tired I rest, if my pain’s agonising, I change activity and analgesic. If I’m too exhausted to think straight, I put on a good DVD and transport myself to another mind state or other side of the world. Sure, finances are tight and I can no longer afford specialists, but being free of all commitments is one of the best ‘treatments’ in itself.
Cort,
I believe that once we have a biomedical diagnostic marker people will be very surprised to learn of the higher mortality rate in those with ME/CFS. The distinction lies in the reporting of the cause of death at the time of death. Doctors are more likely to list cancer, suicide or heart disease, as the cause of death, even if the person had ME/CFS for years. Many doctors dismiss ME/CFS because they don’t “believe” it is a real disease. How many doctors simply leave off the ME/CFS diagnosis as unimportant.
Thanks Annette.
Buchwald did not find evidence of increased overall mortality in her ME/CFS patient population but the studies are pretty limited and I agree that does seem strange.
The point I was trying to make was that ME/CFS advocacy is inhibited a bit because the research as yet does not show signs of increased mortality. If it did I think the NIH would be more inclined to fund ME/CFS. I will amend the statement to indicate that it’s the research does not show that. We’ll see what more studies bring.
yea annete absoloutly. Brenden this is not about being crital of cort . we all appreciate cort and his efforts i assure you. that said you must be kidding me. I know ,my body. I know tjhis disease. I had it since childhood. I can sit here and complain about 3 cancers. I can complain about dysautoinma, whie natter lesiones on my brain and immune system ect ect. you are crazy at this point not to be able to see the obvious. I called my cancer 2 years before it came. I diagnosed before the doctors ever issue in my body that was later confirmed by doctors. they still argue about cancer and other issues as thery dont understand beyond the tip of there nose. there left hand does notknow what right hand is doing. Its ben dec ades pof suffering with no big news. Ive seen top doctors with no m oney and its a joke. they dont know what they dont know. I assure you 100 persent that in 20 years from this date this will be well known. in that I mean they will show c ause and effect is this cfs is behind so many major ilnesses of this i have no doubt and much common sense. So bren den try to see beyond your little world and open your mind to what you dont know. I assure you small tghinking will get small results. Im sorry but its so damn frustrating when you know more than major hospitals doctors and reserchers. You should be more open as a suffere. remember people in europe are being sent to insane aslums in present day because so called reserch. ME mental hospitla. lupus mental hospitals. I assure you your wrong
Wow that is a huge increase in funding for ME/CFS from the NIH. Excellent article Cort thank you!
In terms of a percentage increase it is a very large increase in funding. In fact when I looked at funding over time for a large number of diseases I could find only one other disease out of the hundreds which received, in percentage terms, such a large increase.
That said, obviously we need a lot more but looking at our funding from five years ago we never could have predicted this.
Hi- I’m nearly 30 years into ME/CFS, also with a diagnosis of Fibromyalgia and atypical Menieres disease. Also have a diagnosis of basilar migraine. Life is a juggling act between symptoms! I’ve used a wheelchair 24/7 for many years and have oesteoporosis. I’m now 65 years of age.
I have no idea if my death will be hastened by my having ME/CFS and don’t feel there’s any point in worrying about this because the hard evidence simply isn’t there. Until we have a specific biomarker/deeper understanding of this condition there is not a lot to go on. There are so many variables when doing statistical studies and so called evidence based research is often a minefield of misinformation.
At the level of functional impairment there is no doubt in my mind that ME/CFS is high on the list – but we have to accept that in terms of actually being a killer disease it’s not. I also worry about making comparisons because at my age I’ve lost friends to cancer and other illnesses. Maybe others don’t suffer pre-death for years and years in the way we do with severe ME/CFS but the point is – regarding my friends – I’m still here and they’re not. I’m incredibly grateful to still be alive and not (at the moment!) having to live with a terminal illness. Believe me -knowing you’re going to die from a disease is very different to wondering if (long term) you might. We need to keep things in perspective. I live my life for each day, have always campaigned for better funding into our condition but there’s a bit of me that finds the comparing and griping about other serious illnesses a bit distasteful. I believe many of these illnesses are related at root cause and the ‘answer’ may come via what might seem to be unrelated research projects.
paula im sorry for your condition. its important to understand i have had this illness for about 52 years had it as a young child. Reserch is only scratching the surface and i had disease for over 50 years. doctor peterson is well aware of cancers and more from this disease. tghere are other reserchers that make connections. for anyone on this site to deny what siome people like myself know is the same thing that you feel when your doctors or friends say come on stop being lazy ect. think positive ect. I think we need more sub groups at the very least. all that said there are many reasons why this dise4ase can and does cause cancer. ask klimas, ask peterson many other docs. Again you guys who are saying studies are not showing cancers ect are doing same thing so called reserchers have said for so long about this disease not being real or at best trivializing it. I do think there are biomarkers. I do think that there are people who think they have the disease that dont and others that have not been diagnosed that do have it. I know from motoya that half the people that go to standford complaing they have cfs dint have it. I also know patients that went to levine that have been ovcer diagnosed and i love levine as a person. i happen to know patients personalyt. they work full time and exercise and simplty dont have the disease. we are still crawling people. no one has the right here to say that the reserch is near what it shold be or there is not many doctors who still have no clue as to what disease is. im certainly not afraid of dying im very spiritual and had many spiritual experiances. maybe we need to qualify who really has this disease better with biomakers and history better. there is way to much discrepancy between biomarkers or lack there of. my own particular bent tells me if you dont have neaurological biomarkers and a history of under and some kind of autoimune biomarkers see celltrnd pandas. brain lesiones pert scan. reactivated viruses ebv ect, very low nk count and fuction. very low oxygen lung capacity. unrelenting crippling fatigue pots. These are just some of biomarkers that you should have ande your expert physician should identify to be labled as having cfs. if not you dont have this disease. just my
very strong opinion’
I am absolutely convinced that ME and POTS shorten the life of patients.I do not need scientific publications for that, any more than we know that these are real diseases. Contrary to what many so-called experts think. I think you miss the board here, Cort, sorry 🙂
I wouldn’t be too surprised if the life expectation curve with ME looks like a camel-curve: a large group gets a reduced life expectation and another large group gets an increased life expectation. The later may seem impossible, but ME seems to have aspects that do protect your “health” at the cost of very poor life quality.
Consider the Dauer hypothesis of Naviaux: outlasting the danger could prolong life, at least it did in the nematodes/worms… he took this analogy from.
In more real world examples: many ME patients claim to be far less vulnerable to some common nasties like the common cold. I’m not, but since I started improving some old ailments that were gone for over a decade start to return. They are still a lot nicer then the dreadful truckload of horrible ME/FM symptoms ;-).
Another sort of example: many ME patients live decades with such low blood volumes that would shorten the life of many healthy people to days.
So maybe ME turns the “prevent serious permanent damage” knob to “as hard as possible, even if it makes life of the patient total hell”. For some that may mean: fewer co-morbidities like diabetes, cancer,… than even healthy people, at the cost of a very restricted and miserable life. For others avoiding additional permanent damage may still be impossible despite dedicating all resources to avoid it. These patients would get plenty of dangerous co-morbidities AND a very restricted and miserable life.
The system might not be “gone wrong” for the first group of patients: they might have strongly increased vulnerabilities to additional nasties as well if this “saving” system would be turned off. Turning it down to normal would risk to get them in the second group (ME+co-morbidities) if a strong nasty disease passed along.
It would require a well done large scale research project to find out if this held true, but if so it would learn us a thing or two about our disease. At the very least, it could help explain why “on average” our life expectation isn’t remarkably lower despite many cases demonstrating the opposite. At best, big pharma would be interested in our disease to see if they could “harvest” this “saving” aspect for use in the ER (e.g. septic shock) or to block degradation in many diseases.
It’s amazing how the intention of this post – to point out that studies show that people with ME/CFS and FM have a harder time of it – day to day – that people with other very serious diseases – has gotten pushed aside in this question about mortality. It’s a very important question but it was not the theme of this blog.
It is now though, so to fit that issue into the theme of this blog – let me recontextualize it. Whatever you or I think about mortality, whatever our experience tells us, so long as we can’t point to good study evidence that ME/CFS is causing increased rates of mortality such you can find in MS, we’re probably going to have more difficulty getting funding.
That’s because it appears and lobbyists have actually told us that NIH is more willing to fund diseases that studies show kill large numbers of people than diseases which cause disability but which studies don’t show that. One lobbyist told me ME/CFS would be a slam dunk if we could show that lots of people are dying. We haven’t shown that yet.
More issues are certainly in play. The fact that researchers know for instance that lupus consistently effects the kidneys, that MS consistently effects neurons, that diabetes effects the pancreas – is a great help for those diseases. The fact that we’ve been unable thus far to show that problems with one central system underlie ME/CFS probably makes a lot of researchers shy off.
An excellent article — every advocate should have it on hand when communicating with elected representatives about the incredible funding disparity for such a severely disabling disease relative to other disease burdens.
A quick swing back to the intent of the article!
I take full responsibility for opening this can of worms :)….but I think it is useful because it does underscore the need for more studies which assess mortality rates and prognosis.
“but I think it is useful because it does underscore the need for more studies which assess mortality rates and prognosis”
That might be a can of worms just as well. Who knows what would come out of that? Having different subgroups but poor study methodology screwing up results? Having higher mortality rates then healthy people but living on average longer then people with asthma or obesity? They might conclude we should stop whining as “some people are told they will only live for three more months”. That’d be the variant of “quit whining, you know some people have real diseases.” :(.
I think the real problem lies in “The fact that FM and ME/CFS inhibit functioning more than just about any other disease has been known for decades.”
Unfortunately, it’s not a fact according to almost anybody working in the medical profession. They’ll take a research outcome only based on questionnaires as “proof” that CBT/GET works, even if that study is of extremely poor quality and reliability. But when it comes to being proof of how bad this disease is, many mock at studies “filled out by mentally ill people that do believe they have a real and serious disease”.
We need objective “functional tests”. Things like electrically stimulating a nerve and see how much the connected arm can pull a weight. And we need it done well, like repeated so that they do not only record the initial performance but also the quick performance drop and the very poor performance the day after. Why electrical stimulating? Cause then they can’t blame it on us not willing to do any effort or believing we get fatigued and therefore subconsciously reduce effort.
This test still would be flawed. It would require an objective assessment of how big a signal our brain can keep giving to this muscle, how good the brain is at sending good signals to the muscle so that coordination is efficient… …so difficult studies.
Anyways, if there would exist a “medical certified” machine that would put a clear number on our pain levels and exhaustion levels then the funding problem would be resolved in a very short time. They would first disconnect and reconnect the machine as the numbers would obviously be impossible. Then they would restart the machine. After that they’ll bring in another two machines as this one is obviously malfunctioning. Then they would be at a loss and ask colleagues if they get those very weird results too on ME/FM patients. The rest would be a short period of a strong media storm and time to pass bills to congress and so. That would only be measuring pain and exhaustion, not suffering.
I’d prefer research coming with a good objective pain/exhaustion test and methodology any day above one with clear mortality statistics even if those were bad. It would deliver jaw-dropping results.
As usual, good reporting, Cort, but bad news. Can anything be worse than having the most painful disorder that no one cares about and gets no money? I figured when the ME documentary, Unrest, came out, FM would get kicked to the side even more and so it has. The pie is only so big and since we have no clout and no organization, we get none of it.
I was diagnosed with ME/CFS at the Neuro Immune Institute at Nova SE 5/2014 and after being bed ridden for 3 years, I am back to work but POTS continued to be an issue, restricting my activities severely.When I read the article in Health Rising regarding a woman who was prescribed a medication used for myasthenia gravis ( I can’t find this article you published last year sometime)and was back to actually running again, I contacted a neurologist to see @ trying it. As a result of this exam, a MRI was ordered and I was diagnosed with MS. I always felt I could beat ME/CFS because others had, but MS??? Not so much. I was too exhausted to be depressed with ME/CFS but the reality of MS is another kettle of fish. I’ve started on Aubagio and am scrupulous on my diet. However, walking is recommended but not possible for me, so I continue with yoga. So keep up the awesome work Cort! Your articles continue being relevant and interesting.
You might want to look into LDN Low dose Naltrexone. It has helped many people with MS there are a few books about it and lots of information online.
The whole discussion of what gets classified as a ME/CFS related death has very much been on my mind. I posted recently in the forum section about how much right a patient has to have input into what gets put on their death certificate. I feel like this is an area that needs advocacy as well. I think it would be another way to get the illness more seriously looked at. I do believe way more people are DYING from this illness than gets reported. Of course how can it be reported as a cause or a contributing factor when your doctor won’t even take it seriously?
Useful to read all this information. I had FM diagnosed in 1994 and was put on amitriptyline plus other meds later in the 90s. I was able to work approx. 3-4 days a week but then had spells of the odd year or two when I was unable to work because of pain and fatigue. I have not had children because of the illness robbing me of my health in my late twenties onwards. Menopause has most definitely worsened my condition, in addition to less favourable economic circumstances which are of course linked to my illness and its impact on my cognitive abilities. After an emergency trip in an ambulance last year, the paramedic asked me if I had ever been diagnosed with ME. My recovery from exercise is worse than ever and I am concerned that my overall fitness (cardiovascular) is being impacted. My resting heart rate is quite high, around 90+, and I developed Supra ventricular tachycardia about 10 years ago. I blame the drugs for this but as it is infrequent i can manage it. I take so many meds and get fatigued in a way I never did 10 years ago. My next avenue will be exploring if testosterone supplementation will give me back some energy and allow me to drop of some of the antidepressants. Here is to more understanding of us in the workplace and realisation that it can ruin marriages and fruitful lives. If I didn’t need to work, I wouldn’t but I do need to work to live.
Wow. A paramedic actually asked you if you have ME. Isn’t that something! Good luck with everything and please look into possible drug interactions. I just read that studies indicate that if you’re taking 6 drugs – any 6 drugs – your chance of having a drug interaction is 94%!
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I’ve had upper, middle and lower back pain all of my adult life. The fatigue started 10 years ago and then came what felt like 2 broken feet. Numerous blood tests and doctor visits later, I was diagnosed with Fibromyalgia. I think the stabbing pains are the worst, the fact that my feet still hurt was the most depressing.
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I get that it feels like mortality rates should be high in CFS simply because the disease is so devastating. But the disease itself is so different from these other potentially fatal diseases that researchers have to dig really deep to find the similarities.
It seems to me that there are also aspects of the disease that could potentially act to keep mortality rates relatively low. Some researchers have pointed out that ME/CFS is similar to dauer, which is a highly protective survival state. There’s also some evidence that low metabolism, such as in calorie restriction, can extend the lifespan. These things might not protect against comorbid diseases such as cancer, but they might serve as confounding variables in mortality studies.
I’m also interested in which deaths are caused by complications due to ME/CFS versus which deaths resulted from the primary low-energy state of ME/CFS itself. The flu, after all, doesn’t directly kill as many people as the CDC likes to report – it’s the resulting pneumonia that’s causing those deaths.
I live in a very rural part of the US where the doctors don’t believe in fibromyalgia. I’m told exercise and antidepressants are the “fix”, and even had one doctor tell me if Lyrica didn’t work, then I simply didn’t have the disease. The level of disinformation is scary, and leaves me in pain and tears every day.
I think the fact that Lyrica is approved, and the TV commercials make it show like “oh she’s fixed now that she took Lyrica” when it has about a 30% effective rate among patients (meaning 70% don’t respond to it at all) makes people think that it’s “fixed”, considering that women’s pain as a whole is generally ignored or handwaved away. We’re hysterical females, after all.
For millions such as myself without actual medical care due to the failings of the US health system, fibromyalgia is a death sentence.
Good point. Lyrica despite all the adds only really works in a minority of FM patients.
The ignorance amongst some doctors is just amazing…and hurtful!
I think at some point we are goimg to have to have studies that connect the extremely limited physical lives we lead to worse health and earlier death. I am a pretty functional person with MECFS, but PEM makes it hard for me to get any exercise. That, in turn, has led me to become obese, prediabetic, and develop fatty liver disease, despite eating well. We know that sedentary lifestyles lead to earlier morbidity. I don’t think it’s too hard to connect the dots. We just need the studies.
I agree with Maria. Pre-CFS my labs were fantastic. I exercised daily and slept normally. My labs have steadily gone downhill post CFS as I can’t exercise at all. So many studies show that exercise helps PREVENT cancer and heart disease, etc. No studies to prove this hypothesis that simply the inability to exercise is likely to shorten our lifespan or result in comorbid illnesses that we otherwise could have dodged.
Your point is well taken, Cort, that no proof of higher morbidity results in less $ for research. Makes sense to me. I pray researchers come up with a reliable test. That in itself might eventually lead to more research money due to credibility. We can hope.
The illness warring is quite literally a waste of energy, and futile. However, I have a lot of painful days with CFS. I have lost hours of memory from a crash. I suffer from very severe debilitating vertigo and no, it is NOT an inner ear issue. I daily force myself to leave bed and do something. I get depressed because I have absolutely no control of my person, my life, or anything else and most days I could not care less. But, the most disheartening feeling is when everything is trivialized, by some well meaning people who seem to think I am really stupid. No disease is trivial to those going through it. For me the feeling of never having an answer, a solution or even a treatment is worse than any known disease. And my doctors say I need counseling to learn mind over matter. I would like to be around long enough to watch them eat their words. I would feed it to them. I keep copies.
🙂
Really great post Cort. Your point that ME/CFS advocacy could make common cause with other chronically underfunded diseases like FM and migraines is really worth considering.
Thank you for always being there with up to date information for us all. I think some people forget that you too habe ME and still do all of this for us at no benefit for yourself.
Thanks Gail!
The research about CFS and Firbromyalgia & CoQ10 is actually true. It has really made a difference in my life – CoQ10 helps with energy and the pain and cramps. I started using 2x100mg myoqinon ubiquinone and I could feel a difference already on the first day.
I think I submitted an explanation of what AI is. I hope you received it Cort. I don’t see an option for being notified if someone responds to what I wrote to you. There use to be an option to be notified. If you didn’t get it I would like to try and explain it again. AI which is Adrenal Insufficiency is a very important subject. I was diagnosed with it in the end of 2016.
I like to know where all of you got your diagnosis from I been looking for a doctor to see to see if this is what I have. .. I have fibromyalgia but I also have myriads of other things .. my doctor can’t explain.. they have given up on me and I am basically bed ridden… With no help in sight… Makes me sad to think after 50 specialist up and down the east coast not one could find something .. and then not care I have severe symptoms and tell me they don’t know what to do with me..
Adewyn – I’ve no official diagnosis. My GP mentioned fibro but says she won’t give me diagnosis in case it isn’t I, last time I saw her (few years ago) she laughed in my face and asked me what is it I want her to do (I’ve asked for help with the pain). I’ve been seeing junior doctors since who are really lovely but can’t give me diagnosis. My current one referred me to rheumatologist as he looked through my file and hinted that my GP thinks it’s all in my head. My health has since deteriorated to the point where I cannot work anymore, I believe I’ve both FM and ME, but I am unable to find anyone who could offer me an official diagnosis.
I appreciate the fact that you are sticking to what are at this point stated facts. But I feel like I am living a death instead of a life. I have FM and ME/CFS & it’s an absolute hell. I cannot begin to describe the pain I used to be strong enough to push through every morning I woke up when I was diagnosed with FM, but had not yet contracted ME/CFS. With FM any inactivity freezes joints up. and it isn’t an arthritic type of thing well I have no idea what the facts are it feels like all of my connective tissue has become cement and it hurts so unbelievably to force yourself to move but you have to. The pain from inactivity such as laying still for a couple of hours or sitting in a chair long enough to eat dinner is absolutely mind-boggling. and it takes so much strength to unfreeze those joints. and I can’t even begin to tell you how many problems there are with muscles. move wrong and you can’t move for weeks until injured connective tissue can heal. I’ve actually screamed in pain when I had to have help straightening my legswhen they froze up from being bent at the knee while I slept. I had to ask somebody to I had to ask somebody to manually straighten my legs because I could not make them straighten by just trying to straighten them. that was the most intense pain I’ve ever felt in my life.
Sleep is impossible. it’s like the Princess and the Pea on steroids syndrome. The smallest Wrinkle in a sheet can make the area it’s touching throb like an infected tooth and then it turns into the scream of somebody touching the root of your tooth that’s infected with a metal pick like a dentist uses. I dare anybody to sleep through that.
Then you get ME/CFS and you find you’re too weak to move when you need to desperately because your fibromyalgia Afflicted body has been still for far too long. I think everybody can agree is that non-stop severe pain is bad for your health. it drives your blood pressure through the roof and the stress is very very hard on your system in general. and I don’t understand the comments about swollen hands with rheumatoid arthritis being made as if people with me CFS don’t have those symptoms? I retain water so horribly that all I have to do is move a joint, any joint just a few times too many and the tissue around it turns red and swells up. you can feel the heat radiating from it. I can’t remember the last time my hands getting throw up like a couple of Christmas hams from trying to do just a few simple things.
When I try to walk with assistance my circulation is so bad with the m e c f s that it backs up in my lymph nodes and they become painfully swollen with fluids from being unable to handle the increased workload and needed from being upright and moving. I can’t remember what they call it hyper lymphedema I believe. I have skin as dry and hard as the desert. no amount of lotion or creams or emollients can seemed to give this hide what it needs to be a properly functioning organ. I get frequent staph infections from cracks and lesions on my skin that allow the normal amount of staff that lives on everybody skin without causing any problems if you get into my flesh and my immune system cannot fight it off like it should.
And I proposed the word fatigue be stricken from any reference to what I experience with me CFS. I experience muscle failure.. they simply give out as if I’m lifting a ton of Weights instead of a hand towel. And I don’t fall asleep, I lose consciousness. it happens when I was still driving. I think it was because it was too much neurocognitive work. all I know is if I’m driving in a straight line for a few miles I start passing out at the wheel and I can do nothing to stop it. it used to take hours to make a short Journey on the freeway when it first started because I had to stop and get out of the vehicle. I simply quit driving before I killed myself or somebody else. that’s directly related to me CFS and the so-called fatigue that accompanies it. I’ve said before in this forum that I lose consciousness without warning even in the middle of swallowing food I just put in my mouth. I wake up choking sometimes. it is terrifying and I believe it could kill. I can’t take a tub bath because I’m terrified I will fall asleep and drown.
The reality is that nobody understands that this is a real disease to this day in my surrounding area. not one person have I met that knows what this disease is, not one. so that leaves me Outkast from what used to be my Social Circle and my family as well as the man I love. I’ve been left here alone because I allegedly choose to remain in this bed 99% of my time. There’s no compassion and there is no understanding so my disease is progressing as a direct result of interference and requirements placed on me by an entire community that refuses to accept this disease. I’m required to attend so many freaking appointments I can’t do anything else. I have to save my strength for these appointments and plan on being very ill for a minimum of 5 days when the post exertional malaise hits. and that means out cold . I go without food and liquids because I’m not awake! and when I do come out of it I’m too weak and in far too much pain it’s you use my assistive devices to get up and get liquids. I’m not sure but I think dehydration is dangerous? I’ve developed premature atrial contractions. I already have pots so that was just thrilling to add another symptom do the mitral valve prolapse. I sent I am in a prone position so much I have a tendency to get gunk in my lungs from inactivity. this disease can very easily cause death. oh and I haven’t even touched the falls from having no balance and no one there to catch you. I was getting in bed yesterday after using the restroom and managed to do a face plant. and I literally mean my face planted and my arms didn’t even react to try to stop it from happening. I’m terrified.
I’ve only barely touched on my symptoms and level of debilitation. there are so many things in this disease that can lead to premature death. And I consider that a disease that kills. Maybe they can’t see because it’s happening on the inside in places that they don’t know how to view yet but they’re finding it with their microscopes and new ways of Imaging from all the current research. the stuff that they’re finding is a death sentence if they don’t find a way to reverse what’s caused these things to start happening.
I’m unable to go back and correct the errors from speech to text. I’m so exhausted my lips are quivering from weakness after talking for speech to text
We may be arguing semantics but the consequences of this disease can and I believe has led to death. I wouldn’t be having any problems that I just mentioned if I didn’t have this disease. I would still be healthy and moving and eating right and exercising. My health wouldn’t be at risk. and I certainly wouldn’t be near death. oh I also have a blood clotting disorder it makes me more prone to blood clots. I don’t think lying in bed all day is good for preventing blood clots in your legs. I understand the facts and I see where you’re coming from and rightly so. but I propose that there’s another way to measure death as a result of me CFS. maybe we could compromise and say complications from me CFS? Seems reasonable?
I applaud you on your articles whether I agree or not. You always write what you believe is true and you stand by what you write. I respect that very very much! and you put a lot of hard work into this. but I think on this one we’re going to have to agree to disagree
Thanks Cort for as usual excellent reporting. I have endometriosis since age 11 only diagnosed age 39. My oficcial diagnosis was FMS/CFS though the Rhemotoligist only put FMS in the report sheet I asked for. I understand that many Endometriosis sufferers get similar diagnoses and in this instAnce their ME/CFS/CMS is described as secondary or comorbid. I think there needs to be more research into issues like Endometriosis comorbidity in that it may throw more light in the immune underpinnings of ME/CFS/FMS. Are there any other !asked out there with Endo as a possible cofactor and if there is we need to get it out there to reserchers that matter because it’s being buried.
Really poorly designed “study.” Sample sizes are not comparable. No controls or blinding of any kind. The people who respond to a web study are the people who are well enough to and who have access. This is not an objective pool. Anyone can publish a study if they pay for it.
MS is known to be one of the most painful diseases there is, and it was taught to me in nursing school as the disease that has the highest rate of suicide of all diseases *combined* because of their pain. This not to say that ME/CFS is not painful. This is to say that this study was designed to show that MS/CFS is painful, and it did. Kathleen, MSN, RN
Pain isn’t the biggest issue in ME/CFS – functionality is. This isn’t the first study to find people with ME/CFS are more impaired than people with other serious diseases. Check out this study published in the Am J Med which found significantly more functional impairment in ME/CFS than in MS, Congestive Heart Failure etc.
Am J Med. 1996 Sep;101(3):281-90.
Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups.
Komaroff AL1, Fagioli LR, Doolittle TH, Gandek B, Gleit MA, Guerriero RT, Kornish RJ 2nd, Ware NC, Ware JE Jr, Bates DW.
Author information
Abstract
PURPOSE:
To measure the functional status and well-being of patients with chronic fatigue syndrome (CFS), and compare them with those of a general population group and six disease comparison groups.
PATIENTS AND METHODS:
The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502). We measured functional status and well-being using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which is a self-administered questionnaire in which lower scores are indicative of greater impairment.
RESULTS:
Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. The two SF-36 scales reflecting mental health were not correlated with any of the symptoms of CFS except for irritability and depression.
CONCLUSION:
Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups. Moreover, the degree and pattern of impairment was different from that seen in patients with depression.
Hello, and thank you for such an informative article once again. I am curious to know if anyone has read the article from the same website three years ago, with basically the same title yet stating that cancer and diabetes as well are not as much of a struggle as cfs/me. (I do not usually post under articles and in fact have tried to jump in on chat forums before and been told I had to have answered X amount of times before I could ask a question, but I’m trying here!) Iave no idea if this actually goes to the writer or just the audience.) I guess I am just curious seeing as this is the same article yet three years later, if there have been more studies to negate the understanding that this is more of a struggle than the other illnesses mentioned prior. Thanks again and hope you all have a beautiful, functioning and painless day!
Can I just say something I contracted M.E. in a epidemic in New Zealand in 1983. Life was never the same again. I had remissions but as I have aged my health has deteriorated more. I am now 61, and I am grateful to read other people who have had ill health as long as me, as sometimes I feel so isolated. I also want to say that world wide doctors have betrayed us, by allowing the Scottish researcher to junk us into psychiatric diagnosis and cognitive therapy (which actually can help) but has been used as cop out to say we are mentally ill, not severely ill in many cases. I am a registered nurse. I registered at 20 years old and had to give up my profession. I will never forgive the majority of doctors their arrogance and quite frankly they have given me Traumatic Stress Disorder with their verbal abuse of me. Being a big proud young woman I never spoke about the blow to my pride all these decades, now I will. I have the care of my adult disabled son, despite my illness. I can live with a lot of pain, what I cannot live with is the neglect of the majority of doctors regarding this illness, and if I did not have the GP I have (with a loved one with ME to) and her assistance to at least give me a decent night’s sleep from pain I sometimes doubt I would be here. So thank you to that tiny minority of good ME doctors world wide.
Thanks for coming out publicly about the emotional hurt caused by the disbelief that you encountered. Hopefully that will clear the way for others to do so as well.
such a touching post … I understand … …you may also note that these illnesses don’t get full attention because many ppl give up and dont continue to get the full diagnosis … so the real numbers of ppl in pain is much more ….
I v had chronic pain and it has been told to be it could be FM for 8 years … I never fully got the diagnosis because I withdrew from medical doctors who aren’t helpful … I have a professional working life (seems functional, right?) but I spend all my limited energy on keeping my work … I have nothing else to keep on keeping on because my spoons r so limited …And with FMs and CF things change too .. my energy has come down significantly in the past year .. FM is something that changes …
overall, I appreciate and applaud everyone for their efforts …. I dont have much hope for myself …
This is such a touching post … I understand … …you may also note that these illnesses don’t get full attention because many ppl give up and dont continue to get the full diagnosis … so the real numbers of ppl in pain is much more ….
I v had chronic pain and it has been told to be it could be FM for 8 years (since 29yrs old) … I never fully got the diagnosis because I withdrew from medical doctors who aren’t helpful … I went from one doctor to another … I live alone most of my life …
I have a professional working life (seems functional, right?) but I spend all my limited energy on keeping my work … I have nothing else to keep on keeping on because my spoons r so limited …And with FM and CF, things change too .. My energy has come down significantly in the past year ….They say MS is progressive but FM isn’t. But I see it is … It built on … I dont like to compare illnesses because I dont like to judge others … About myself, I can say my life has been significantly transformed in a deep way … This illness has changed my relationship to everyone …. I appreciate and applaud everyone for their efforts …. But I dont have much hope for myself … I think the solution for these illnesses are complex because alternative therapies can play an important thing but the corrupted medical system of doctors (the ones you feel e more grant can help them!) does prefer to promote their fellow friends in drug industry.
In 2014 I started experiencing lack of muscle control when performing strenuous exercise, within months I had tremors and terrible mood swings. After bouts with many neurologists I was diagnosed of MULTIPLE SCLEROSIS, I was placed on medications which relieved some symptoms but my health was fast declining. Finally, I was introduced to Mayaka Natural Clinic and their effective Multiple Sclerosis treatment. I immediately started on the treatment, it relieved symptoms significantly, even better than the medications I was given. Visit ww w. mayakanaturalclinic. c om. First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life.
I self diagnosed CFS/ME in 2000 after suffering the after effects of Ross River Fever (in Australia) and received zero help from doctors or naturopaths. FM never came up in my searches, and my symptoms fitted very well with one and a half dozen or more possibilities for CFS/ME. I believe the ME was introduced later to try and differentiate from CF? It is only in more recent years that I have become aware of FM, and have realised that there is a big overlap in the selection of symptoms from which one can suffer with either of these syndromes. I have seriously wondered whether there is only ONE syndrome, and that is pure chance which handful of symptoms point more strongly to “CFS/ME” or “FM”. Is there any recent research circa 2021 to solve this?
Thanks so much for reviewing the study comparing ME/CFS to MS. I recently developed tingling in my arms and legs and vertigo after about 7 years of ME. I first thought it might be MS but am less alarmed now. Will check with my doctor though.
I was diagnosed with multiple sclerosis in 2015, and I was a woman of 50. They put me on Rebif which I took until 2017 and was switched to Copaxone. I had two relapses on Rebif, none so far on Copaxone. I do notice my balance was getting worse, and my memory, as well as erectile dysfunction and spasms’ had no choice to sick for other solution and I was introduce to multivitamincare .org which I purchase the MS herbal formula from the foundation, the herbal supplement has effectively get rid of my multiple sclerosis and reversed all symptoms.
I don’t know if you’re still reading these comments, but I just wanted to say that I don’t think it’s fair to compare how someone with ME/CFS feels versus how someone with MS feels versus how someone with FM feels versus how someone with Sjogren’s feels versus how someone with RA feels, Lupus, etc., etc. Every disease or syndrome is different and every disease manifests differently from person to person. What may disable one person who has RA, MS, Lupus, etc., may not be disabling for another. There are even different types of MS: primary progressive MS (arguably the most physically disabling), secondary progressive MS, and relapsing remitting MS.
I was officially diagnosed with MS in 2017 but began having symptoms about eight years prior to that. My MRIs were even abnormal, and, despite being told that the results of my lumbar puncture were normal (one neurologist told me that my B12 level was low, and that was causing my myriad of symptoms), an MS specialist told me that they were in fact not normal. An active lesion in my brain, found by an MRI, which I had done after my entire left leg went numb during a meeting one day, eventually earned me my diagnosis of MS.
My primary symptoms are cognitive issues and fatigue, and I have been on disability specifically for those issues since 2019.
I also recently (as in last week) finished chemo for Ewing’s sarcoma, a bone and soft tissue cancer. The chemo, as well as the cancer, caused further fatigue, and I was unable to take my MS medication because it would further suppress my immune system, which is pretty much nonexistent because of chemo.
Just as one should not compare how disabled one who has MS or FM or ME/CFS, is, one should not compare how disabling or tough chemo treatments are from one cancer to another. I personally can’t stand it when someone compares their breast cancer to my sarcoma. If you don’t have Ewing’s, you can’t compare what you’re going through with what I’m going through. I’ve had 15 blood transfusions, two units of platelets, three surgeries, and have had to be hospitalized five separate times since January.
And that’s what I’m getting at. If you have MS, you shouldn’t compare what you’re going through to what someone with ME/CFS is going through, because you have no idea. And this goes for someone who has ME/CFS comparing what they’re going through to what someone with MS is going through. You can’t make that comparison because you simply have no idea.
It drives me crazy when I tell someone “I’m tired,” and they say, “I understand,” because the truth of the matter is they DON’T understand. I’m tired because I have MS. When I am fatigued I literally can’t get out of bed. It’s even exhausting for me to walk from one room to another. I don’t even want to get up to use the bathroom because it feels like an absolutely arduous task.
Here’s something we can agree on, though: funding. The disparities in the levels of funding for all the diseases you mentioned are appalling. ALL of these diseases and syndromes deserve equal funding for research, in my opinion. This goes for cancer research as well. If you look at the levels of funding for different types of cancer research you’ll find disparities as well. Ewing’s sarcoma, for example, especially in adults, receives far less funding for research than, say, funding for breast cancer research. People will say, well, far less people are diagnosed with Ewing’s sarcoma each year (approximately 450 annually in the US) than with breast cancer. True, but are the lives of these people any less important?
I think we should all think about these things when deciding “which disease is worse.” Because when you’re the one who’s going through it, trust me, what you’re going through is absolutely worse than what anyone else is.
I can’t help but wonder which stage of MS was compared to CFS & Fribromyalgia. I’ve been diagnosed with all three & I can tell you that CFS & FM are not worse than MS. MS is a progressive disease. Maybe a young person with relapsing/remitting MS is in better shape than someone with CFS or FM. Most people with RRMS will at some progress to Secondary Progressive then Primary Progressive then death. I haven’t heard of anyone dying from CFS or FM. MS is a very debilitating disease that causes permanent damage to your brain & body. I’ll take CFS or FM any day over being completely incapacitated.