Severe ME in children, by Nigel Speight in Healthcare Vol 8, #3 p 211, July 14, 2020 [This article belongs to the Special Issue ME/CFS]
Guideline abstract
The current problem regarding Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.
This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.
4. Possible Clinical Features of Severe and Very Severe ME/CFS
- Minimal energy levels, resulting in the patient being housebound or bedridden;
- Paralysis;
- Severe generalised continuous pain;
- Severe continuous headache;
- Hyperaesthesia/extreme sensitivity to touch;
- Abdominal pain, worse after food—this may be so severe as to interfere with nutrition;
- Sleep disturbance, possible hypersomnolence or difficulty sleeping on account of pain and headache;
- Major problems with cognition, concentration and short-term memory;
- Extreme sensitivity to light and sound;
- Multiple chemical sensitivities;
- Problems with eating and drinking—this can be due to either general weakness or actual dysphagia, and this may necessitate tube feeding;
- Aphonia (mechanism unclear);
- Myoclonic jerks;
- Incontinence.
17. Take Home Messages
- Severe ME constitutes a major challenge for both patient and doctor.
- Mismanagement in the form of “activation regimes” can result in permanent harm or even death of the patient.
- The patient deserves the total commitment of one doctor, who is willing to visit at home on a regular basis.
- Referral to a psychiatrist who does not believe in ME/CFS can be harmful.
- The patient should be protected from sensory overload.
- The doctor should resist the temptation to overinvestigate, or involve too many other professionals.
- Nursing at home is usually far preferable to admission to a busy general hospital.
- Tube feeding is indicated when the patient has problems with eating and drinking.
- Urinary catherization may be helpful in reducing the stress of having to micturate.
- Symptomatic treatment for pain and sleep problems is worthwhile.
- Full recovery is possible.
- The role of immunoglobulin deserves further study [10].
- There is a need to improve both undergraduate and postgraduate medical training in this area, and to provide greater resources for the patient population affected.
Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed.
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Background: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses.
We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the 
Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome community tried to create medical credibility and patient visibility for a chronic, controversial disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse. Keeping a cultural approach to health communication as a phenomenon that maintains, produces, and transforms health and illnesses, I analyze news, fictional and talk-show programs.
In doing so I will mainly focus on programs that aired at the turn of the century. This is not just for historical reasons, but for two other strong motives: if it’s true that new spaces, like the Internet and social media, opened up and gained strength in the meantime regular TV still maintains a broader and less topic-focused approach that can reach outside the intended foreseeable target audience; also, with regards to ME/CFS, some of the main communication issues are now still the same as in the beginning, and it is worth looking at the roots of how we talked about it to draw inspiration on what worked and what should be done differently.
Terri asked Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force), what NIH is doing to address Covid-19 “long-haulers” risk of developing ME and CFS and pointed out that there has been very little funding invested in research into ME and few medical providers know how to take care of people with ME. There are still no FDA approved drugs to treat ME.
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19.
Here we report the results of a randomized, placebo-controlled trial using 
