Encephalomyelitis out, Encephalopathy in.
Dr. Melvyn Ramsey (photo) explains in his book ‘Myalgic Encephalomyelitis and Postviral Fatigue States’ that the Polio outbreaks were seasonal, between late summer to early autumn. Polio (Poliomyelitis) is a disease rarely seen these days. It starts with a gastric flu like illness then after an apparent recovery some patients developed permanent lifelong paralysis. It was well known that those who were affected were those who were physically active at the time of infection.
But the 1955 season was different for the Royal Free Hospital. On July 13th a doctor and a ward sister were admitted with an obscure illness. July 25th saw 70+ staff affected. The hospital had an epidemic of a virulent virus. This virus was similar to polio. The hospital closed until October 5th, although sporadic cases appeared up to the end of November. 292 members of staff were affected. Many were admitted to hospital. Although the hospital was full at the time, and only 12 patients developed the disease. In otherwords the disease didn’t affect those resting in their bed. It hit the workers. The people had pain (myalgia), brain problems (encephalitis), and spinal chord problems (myelitis), hence the name Myalgic Encephalomyelitis. There are still a number of patients disabled today from that outbreak. During that period there were many similar epidemic outbreaks around the world.
It was known in the early 19th Century if anyone suffered from Cowpox, it gave lifelong immunity to its sister disease,.smallpox, a major killer. An M.E. epidemic occurred in 1948 in Akureyri Iceland, that had conferred immunization against polio in the following year’s outbreak. It was smaller than expected. Likewise, we do not see much epidemic M.E. today because of polio widespread vaccination.
These days viral triggered M.E. is common, but so are cases where no viruses have been involved. After much research no single culprit has been found. M.E. is some sort of damage to the nerve, muscle and the immune system and sometimes other organs which may, or may, not be reversable. If you think about how you can break a leg, - car accident, playing sport, falling, the cause is analogous to the triggering event or illness. Eventually most fractures will heal, but there will always be a scar, weakness, tender point, or tendency for arthritis. In otherwords the leg will never quite be the same after, this is analogous to M.E.
The controversy over the name M.E. started when two Psychiatrists, Drs. McEvedy and Beard declared that the Royal Free Outbreak was 'mass hysteria’ in 1960. Controversy magnifies itself, this being the root of the discrimination we see today. As we don’t see the epidemic form of M.E. with ‘myelitis’, many doctors do not accept M.E. So a more acceptable alternative has been found. The ’M’ for Myalgic (muscle pain) stays, but the ‘myelitis’ goes. In its place the ‘E’ Stands for Encephalopathy. This means anything affecting the brain. I don’t think anyone in M.E. circles would dispute this, AND it may even be more palatable to the sceptics.
What happened to Polio? Thanks to vaccination it is rare in the U.K., the annual number being in single figures. Like M.E. there are many victims today who are still affected. Mike.
Can there be a Family Risk factor for M.E?
For me the answer definitely is yes. I can think of three members who have a parent and a child with M.E. and a brother and sister who both have M.E. My attention was recently raised by a member who had a relative whose history follows. The case occurred around the 1950’s and bears many of the hallmarks and frustrations of undiagnosed M.E.
Bill was born in 1901. Like most of his family in the South Yorkshire Coalfield, he started working in the local mines after leaving school. He married, had a family, and was in normal health except for the odd minor accident that was common in the mining industry at that time. Bill’s problems started on 6th, January 1949, when he was hit on the head by a large lump of stone. He was not unconscious, but was off work for several weeks because of pain in his neck. On the 17th, February, 1949, he was crushed by a fall of stone receiving blows on head, back and shoulders and was practically buried but not unconscious, but collapsed after being rescued. He felt very weak but managed with assistance to walk to his home. Later he developed pain in his back and shoulders, weakness of arms and general itching and shooting pains in perineum. He was seen at a local hospital on May 3rd, and on September 27th was sent into a rehabilitation hospital, where he remained an inpatient for 6 weeks.
On the 15th February 1950 he was not well, and was sent by his union to see a doctor in an attempt to claim compensation. Bill had pains in his left arm and chest. His arms and legs felt weak. Repeated shooting pains in perineum, and pins and needles in the feet. He had a dislike of noise and crowds was is easily irritated. He also suffered from numbness of the lower limbs and complained that he feels generally weak. He also complains of a fluttering sensation under his skin in various parts. He stated that his symptoms got worse if he did any heavy exertion. All movements of the limbs and spine were mobile and movements were painless. His opinion was:
“In my opinion this man is not suffering from any disablement that can be demonstrated. On the other hand, I am convinced that this man has sustained severe shock to his nervous system and the present complaints are a manifestation of this mental upset. I would advise therefore, that he should be seen by a psychiatrist, as I feel that otherwise this man may never return to his pre-accident work“.
Bill was given light surface work and managed that successfully. On the 20th March he was sent to see a Psychiatrist. The report stated:
“He does not get depressed and that his memory and concentration are quite good. There are no abnormal physical findings. Mentally he is alert and cooperative and seems a quite good type. His complaints, are clearly , psychogenic in origin, and, due largely to loos of confidence in himself. From the history it seems clear that these symptoms developed as a direct result of the emotional disturbance associated with the accidents, and must, in my opinion, be regarded as directly due to the accidents. I would say that the disability is about 20%. Further improvement may be expected as he regains his confidence. I am not prepared, at the moment, to say whether there will be any permanent disability or not”.
Before his accidents Bill weighed 11st. 7lb, six months later his weight had fallen to 10st 7lb and twelve months later to months 10st 2 lb. From then on Bill had a history of many accidents when he worked underground spending much time off work. Towards the end of his mining career he was carried along by his workmates until his retirement.
Bill died in 1986 from the chest problems that are a hazard to miners. Right until the end he was frustrated and convinced that the accidents had dramatically changed his life. Looking back suggests that his history is similar to at least two members of our group. He had a normal life before; the accident being the trigger. Then there was a rise in symptoms as many experience in M.E. There was disbelief, and he was never the same after. His daughter had signs of M.E., and there is no doubt that his grandson definitely has.