Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise as readily as physical exertion. For me personally, cognitive difficulties are the most frustrating and frightening symptoms of ME/CFS. My cognitive function is a significant part of my identity, and I didn’t stop working until it was clear that I could no longer perform the cognitive tasks required of attorneys. I fear losing even more function.
Maintaining and improving cognitive function is extremely important for overall health, but ME/CFS patients face extra hurdles. Those of us who are housebound or bedridden do not encounter much new stimulation in our daily environments. Some patients are so ill that they cannot tolerate sight, sound or touch, even in the quiet of their homes. If and when we do go out, crowds and stimulating environments are overwhelming and can make us sicker.
But while plenty of attention is paid to physical therapy approaches that might help stave off some deconditioning, almost no work has been done on cognitive rehab approaches. This is a huge gap in our knowledge, and in our therapeutic approach to ME/CFS.
I’ve been reading about neural plasticity lately, as part of our ongoing effort to help my husband recover from his stroke. The adult brain has the ability to form new neural connections after injury, rewiring itself to work around damage. But it is also the case that function can be lost through lack of use – the “use it or lose it” principle.
ME/CFS patients already have inflammation or other problems in the nervous system, and the necessary avoidance of stimulation in order to prevent PEM probably means that we are losing function because we are not using it. Just like our muscles become deconditioned because we cannot exercise, our brains are most likely being changed by the isolated environments we are forced to occupy and maintain. But I wonder if the brain could recover from that with appropriate rehab.
What can be done about it? I am not aware of any research into cognitive rehabilitation in ME/CFS. I have never been advised by any healthcare provider to take steps to protect my brain health. As is so often the case in ME/CFS, I’ve had to make it up as I go along.
Here are the things I’ve done which, in retrospect, I think have helped improve my cognitive function. The gains came very slowly, over a long period of time. Most of these activities started as a way for me to stave off boredom. It is only in looking back that I realized they had helped.
Minimize the idiot box – When I first got sick, I watched a lot of television because that was all I could do. Whenever I crash, I am reduced to lying in bed with the tv on (if I can tolerate the sound). But it’s better to minimize watching television if you can. I find tv has a deadening affect on me, dulling my awareness and clouding my mind. I never watch it during the day, and in the evening we usually watch films or sporting events. No sit coms or tv dramas for me. And I completely avoid all tv news because it is both depressing and over simplified.
Listening – A better activity for me than the television is listening to programming. Podcasts are a marvelous way to learn new things and hear different perspectives on issues. Audiobooks are also wonderful. Listening requires a different kind of attention than television, and that variety is important. If you can’t listen to spoken recordings, then try music. It might be easier to listen to music you are already familiar with, but trying new music is also good. When I’m really sick, I simply lie in bed and listen to classical music. It is relaxing and can help me sleep, in addition to stimulating a different part of the brain.
Reading – I was a voracious reader before I got sick. I still love to read, although I’ve had to reduce the complexity and length of reading material. I tend to read a lot of popular novels now, especially genre fiction. I can’t read advanced nonfiction anymore, but I try to vary my reading with general science writing and biographies. If you are able to read, then do. Find easier books or shorter articles. Branch out into areas you might not have read before. Make sure you have adequate lighting (to reduce eye strain) and take rest breaks. Nothing takes me out of my isolated world like a good book, and it can stimulate new thoughts and curiosity.
Play games – I like playing simple games, such as Drop7 or solitaire, or interactive puzzle games like The Room. I can’t tolerate the visual stimulation and speed required for Xbox games, but if you can then there are lots of games to choose from. You can also play games designed to exercise your brain, such as Lumosity or BrainHQ.
Puzzle solving – I don’t know why, but it had not occurred to me to try jigsaw puzzles until last year. It takes me a long time to put a puzzle together, but it is an absorbing activity. Puzzles are both tactile and visual, and use spatial reasoning. I’m not a crossword fan at all, but that would be an excellent activity for some people. I have found word searches to be too boring, but again, it may be a great activity for some people. I was afraid of Sudoku for a long time (because math), but now I love it. There is no math involved, just logic. I spent a lot of time at the super simple level of Sudoku, but gradually got better and better at it. Start at a basic level for any puzzle, and advance difficulty only when you are able. It’s a different way to pass the time and work your brain a bit.
Knitting – Knitting is one of my favorite hobbies, and I know patients who crochet or bead or paint. Whatever creative hobby appeals to you, it’s proven to be great for your brain. Fine motor coordination, following instructions, and learning new skills are all part of craft activities. If knitting doesn’t appeal, there’s photography, scrap booking, weaving, drawing, calligraphy, quilting and on and on. Try something new. For me, knitting reduces my stress and makes me feel productive.
Writing – Over the years of keeping this blog, it has become easier for me to write. It is still the most cognitively challenging activity I do, but it has become easier with extended practice. If you can write in a journal, or send an email to a friend, or start your own blog, it is an excellent way to challenge your cognitive function. When I am writing, time disappears and I lose awareness of my pain. It is completely absorbing, although that means it is also tiring. Stick to what you can do without crashing, but written communication is a great brain workout.
Playing an instrument – This is my latest foray into a new activity, and I can almost feel it changing my brain. My mother played cello for years, and when she died I decided to give it a try. It took many months to find a physical position that I could tolerate, and to build up the strength to play more than a few minutes at a time. But I stuck with it, and I’m so very glad I did. I could already read music, but learning an instrument as an adult is a very different experience from learning in childhood. I love the challenge, and I love trying to improve each time I play. There are so many things to concentrate on at once, and that has improved my ability to sustain focus and attention. I have to be cautious because playing the cello is physically very challenging for me. But it feels so good for my brain, it is hard to stop. I know patients who have picked up the guitar or ukelele (which is apparently easy to learn?). If you played a recorder or other instrument when you were younger, you might consider trying again. You could also sing along with recordings. The act of playing an instrument stimulates a different part of your brain, and you improve as new connections are formed in the brain. It is delightful.
General Thoughts
Obviously, not all ME/CFS patients can do all of these activities. I have to ration my energy among one or two brain activities in a day. Now that I am playing the cello, I am knitting much less. I have simply shifted the activity capacity around, rather than expanded the energy I have to work with.
There’s no heart rate monitor for the brain, so it is tough to know when you are approaching your limit. Severely ill patients will not be able to sit up to solve a jigsaw or play an instrument. They may not be able to tolerate listening to music or audio recordings. Reading is impossible for some patients.
But it is important to do what you can, at whatever level you can comfortably maintain. Being housebound or bedridden is isolating and monotonous. Using your brain in new ways and encountering new things is good for you. Improving at an activity is also very satisfying. Try something new that is simple and easy to tolerate. Build from there as your capacity and interests allow. There may not be any research addressing the importance of brain health in ME/CFS, but it is common sense to do what you can within your limitations.
What brain activities have you tried?
It’s a good thing I was forced to write this post lying down, because I might have passed out or thrown up when I saw the RFA totals for last week. Take precautions before you keep reading:
AHRQ Evidence Review Changes Its Conclusions
Mary Dimmock has led the way on this issue, and is co-author of this post.
At Long Last, AHRQ Undertakes Reanalysis
The 2014 AHRQ evidence review had originally reported that treatment with CBT and GET improved fatigue, function, global improvements, and employment in ME/CFS patients. This conclusion was based on an analysis that combined studies using any of seven CFS and ME definitions as though they represented the same disease. We highlighted this fatal flaw in our comments on the draft evidence review. The review itself acknowledged that CFS definitions did not require hallmark symptoms of the disease, that no treatment studies used ME/CFS or ME definitions, and that the Oxford definition was so broad that it would include patients with other diseases and should be retired. The 2015 NIH Pathways to Prevention report concurred that Oxford should be retired, stating that it could “impair progress and cause harm.” And yet, the 2014 AHRQ evidence review maintained its conclusion that CBT and GET could benefit some “ME/CFS” patients, based in substantial part on studies that used the Oxford definition.
Following the publication of David Tuller’s PACE analysis in October 2015, ME organizations and advocates called on AHRQ to reanalyze the PACE trial, to analyze the results of Oxford studies separate from studies using other definitions, and to analyze CBT studies separately from other forms of counseling. Following requests in November 2015 and again in February 2016, AHRQ agreed to ask the authors to reanalyze studies by definition and to separate out CBT from other counseling studies. They declined to reanalyze the PACE trial, which they had ranked a good trial with “undetected” reporting bias.
This new analysis was published in late July as an Addendum to the original report (see pages 1-16 of the linked report). This updated review reanalyzed the effectiveness of GET, CBT, and other forms of counseling, first with Oxford studies included and then after Oxford studies were excluded. As we predicted, breaking out the Oxford studies forced a significant downgrade in the review’s conclusions.
GET is Ineffective for ME Patients
The 2014 evidence review had combined four GET studies and two other exercise studies (qigong and orthostatic training) in its analysis and concluded, “GET improved measures of fatigue, function, and clinical global impression of change compared with controls.”
The Addendum reanalyzed just the four GET studies, three of which used the Oxford definition. When all four GET studies were analyzed together, the Addendum reported a moderate strength of evidence of improved function and global improvement and low strength of evidence of improved fatigue and employment. But when Oxford studies were excluded from the analysis, the Addendum reported that there was insufficient evidence of effectiveness of GET on any outcome.
CBT Is Barely Effective
The 2014 evidence review combined CBT and other counseling therapies in its analysis and concluded that collectively, these therapies improved fatigue, function, quality of life, and global improvement. Acknowledging that “CBT is a unique approach with disputable underlying rationale regarding the fear avoidance theory contributing to the perpetuation of symptoms in ME/CFS,” the Addendum reanalyzed the seven CBT studies separately from the other counseling studies. The Addendum also analyzed the Oxford CBT studies separately from the Fukuda CBT studies, although one study (Deale 1997, 2001) appears to have been incorrectly classified.
When all seven CBT studies were reanalyzed, the Addendum reported low strength of evidence for improved function, fatigue, and global improvement; insufficient evidence of improvement in employment; and low strength of evidence that CBT did not improve quality of life. When Oxford studies were excluded from the reanalysis, the Addendum found insufficient evidence of effectiveness of CBT on function, employment and global improvement and a low strength of evidence of improved fatigue.
Implications and What Next
The Addendum reaches a damning conclusion, cloaked in dry language:
In other words, there is no evidence that supports the conclusion that CBT and GET are effective treatments or ME or ME/CFS patients.
And THAT is a ground breaking conclusion.
CBT and GET still remain the most common treatment recommendations across mainstream “evidence-based” medical education today. Recommendations for CBT and GET have been based directly on Oxford studies like PACE, or indirectly through evidence reviews such as AHRQ and Cochrane that have relied heavily on Oxford studies. At the same time, these treatment recommendations have ignored numerous patient surveys that have reported harms from CBT and GET. The resultant medical education, including that from CDC and key medical education providers such as UpToDate, confuses medical providers on the nature of the disease and puts patients at significant risk of harm from inappropriate treatment.
Recommendations for CBT and GET have become so pervasive that they are also found in the educational plans of medical societies. The American Academy of Family Physicians issued a 2016 needs assessment for education of members that specified that CBT and GET “improved fatigue, work and social adjustment, anxiety, and postexertional malaise” and called out the need for more training of doctors in the use of exercise therapies.
The problem, as this reanalysis found, is that when you remove the Oxford studies, the positive effect of CBT and GET disappears. The Addendum notes that “using the Oxford case definition results in a high risk of including patients who may have an alternate fatiguing illness or whose illness resolves spontaneously with time.” CBT and GET appears to help these patients to a limited extent. However, the recommendation of either of these therapies for ME and ME/CFS patients is inappropriate.
This Addendum highlights a key issue that has perverted medical education and evidence reviews in this field for a long time. It is medically inappropriate to make recommendations for disease treatment based on studies in patients who do not have the disease. CDC, UpToDate, AAFP, and other medical education sources must change their recommendations for ME/CFS treatments. Furthermore, NIH must address the gap in treatment trials for ME and ME/CFS patients by funding intervention studies on these patients.
There is no evidence that CBT and GET are effective treatments for us, and therefore, these treatments can no longer be recommended. If CDC and others persist in recommending treatments for which there is no evidence of effectiveness in ME/CFS patients, it will not only perpetuate confusion but also put patients at risk. Such an unscientific recommendation goes against the principles of evidence-based medicine and is not accepted in other diseases. It will not be tolerated here.
Edited 8/24/16 to add: Some medical education sites may be using these terms to refer to some other form of talk therapy and “exercise,” not PACE style CBT and GET. But the ambiguity in what is actually being recommended and its expected benefit creates medical misunderstanding and a risk of harm for patients, especially given the lack of published evidence for these other approaches and the volume of evidence for PACE style CBT and GET. Recommendations for talk therapy and any kind of “exercise” or activity management must be precise in terms of the recommended approach, the expected impact and benefit, the potential harm, and any contraindications, particularly for severely ill patients.